Saturday, October 31, 2009
Friday, October 30, 2009
Travis has been the proud big brother. He is telling everyone we meet that Justin can crawl, and he cheers excitedly each time. He loves prompting him to crawl and now enjoys putting things just out of his reach. Justin crawled out of the bedroom where he was sitting with daddy to come find me in the living room. He will crawl for a bit and then sit and rest, but if it's a good thing, he'll get back up and keep after it. He also resorts to the old standby of flopping down and rolling to it. That is still so cute it's hard not to laugh!
Tuesday, October 27, 2009
Thanksgiving? Never heard of it!
Halloween?! That's when I do tricks!!
That's right! Justin learned to crawl! He did a couple of solo knee/hand steps on Sunday night, Monday afternoon he did 5 crawls all by himself, and today...he took over the dining room! I bought the wrong discs for the video camera, so I had to settle for plain photos, but here is the progression...
Look out Mommy, here I go!
Are you watching, 'cuz I'm gonna do it!
Looking for something to go after...
I think I can, I think I can...
Look at my boy on all fours! You cannot imagine how difficult it was to get him in this position even a few months ago!
Now Travis took over the camera, while mommy made a few phone calls. Justin decided to come after me.
And then Justin had to rest while mommy shared the news.
Justin took about 25 crawling steps, and then he was tired and wouldn't do it anymore. Every day has been a step of progress, so I am guessing he'll be uncontainable soon. I even called Miss Penny, so Justin will be expected to perform tomorow morning!
Sunday, October 25, 2009
We had to take this picture for Travis. He was never far from our thoughts, and we knew he would appreciate this.
And we take a picture on our trip every year that we put in a special picture frame to remember the time. This was on the porch of our bed and breakfast. We learned how to use the timer on the camera. This was attempt number 5 I think. It was a short trip, but just what we needed. It was so good to talk with Randy just to talk, and not for planning or sharing information. I am beyond blessed by Randy, and it's times like this that bring those feelings back to the surface.
Oh my goodness!
It was so exciting, and of course, no camera, but a whole bunch of witnesses! And he did it several times, trying to get a ball that would roll just out of him reach. He would do the hands and knees and then fall on his face, roll over, and sit up. We clapped, and he clapped, and we shed a few tears. And then our dear friend, our refuge during the hurricane last year, grabbed her video camera and got a few shots of him doing his thing. Precious beyond belief!
Travis had a new friend in our Bible study and the two of them were running all over the place. Justin eyed them and I could see the little wheels turning. He is no longer content with being a bystander. He is ready to join the fray!
Back last month when we attended the various events about DS and the microboards, the president of the local DS chapter asked me if I would be willing to be one of the new parent contacts for the area of town in which we live. She said it would only be about 4-5 a year for our area, and that didn't seem like too much, so I was inclined to agree immediately, but I hesitated and said that I would get back to her. I am glad I did, just because I am trying to be more purposeful in my time. Some things don't seem like that much, but if I am not the person to do it, not only is it taking away my time that should be spent elsewhere, it is also depriving the person who should be filling that role with the experience they should be having. Anyway, so during this time I have been thinking about what I would say to a new parent. Not someone waiting for a diagnosis, but someone who knows that their child is DS, and is faced with the "what now?" feelings.
This semester in bible study we have been discussing marriage and this week the topic was communication. Some of the verses we read had to do with communication in general, and how it should be for building others up, and not tearing them down. I know I have often thought of my words as so momentary and fleeting, and while they may not always be flowery and sweet, and least they are not cutting and harsh (most of the time...). But this made me think of things differently. Are my words useful and helpful?
I could not help returning to the words that were spoken to us when we learned about Justin and started sharing the news. It pressed into me in a totally new way how permanent words are. I can relive entire conversations from that time. And the feelings that those words invoked in me. Some words pierced like a sword. (Prov. 12:18) "Oh, it will be just fine. It's no big deal." Those are reckless words if ever I heard any. It makes me realize how crucial it is to chose words carefully. I want to build people up, especially new parents of a child with DS. We need some major building up! So right now, these are the only things I can think of that I really would have wanted to hear:
I have felt every thing you are feeling now, even if it is too cruel to say out loud. I had a friend who had a miscarriage about the time that we shared our news about Justin and the thought crossed my mind, "She is so lucky..." I would never say that now, but at first the enormity of the task of raising a child with special needs made me wish it would just go away. Now it is just the task of raising Justin, and that is something I can do.
It will get better.
I am not sure what else there is to say. Not everything will be believed, but the words will stick and come back later to be a comfort. And if this task is something God leads me to, I know He will give me the words. I can rest on that promise.
Monday, October 19, 2009
- We are SO close to crawling! He is getting up by himself and rocking on his hands and knees! And if we have something very enticing out in front of him (like something he is not supposed to have for example...) he will crawl with even Randy or me holding up his chest with one hand. And he will do it anywhere now, not just at therapy.
- I told you last month that he sat up by himself in bed once, and then he didn't do it again for a while. Last week he started doing it in bed again, and now he can sit up from being on his belly whenever he wants. That is so amazing since he started being more curious and he falls on his stomach from sitting when he is reaching for something, and then he gets stuck. Now he can get himself up without needing our help. Which is good, because sometimes Travis is the first person to get to him, and that isn't always the help he needs!
- We have been working toward picking things up with a pincher grasp (thumb and index finger). Most often he uses the palmer grasp, using the palm of his hand, and all fingers together. I thought the next step would be the pincher, but apparently there are 2 intermediate steps I didn't know about: the ulnar grasp and the radial grasp. Ulnar is the outside of your palm and the pinkie and ring finger, and then the radial is the inside of the palm and other 2 fingers (index and middle) and then the radial grasp evolves to a pincher grasp. Again, learning so much, I am! So, during therapy Miss Caroline has seen him use the radial grasp (the direct precursor to the pincher) several times! And today during lunch I broke up his veggie sticks into smaller pieces to get him to pinch, and he did it! Once... And then it was back to one of the other ways, but at least I know he can do it. I know it takes a while for new things to stick, and if nothing else through this process, we are developing patience.
- I never would have guessed it last year when Justin's arms flailed around constantly, but he has turned into the very best hugger! When I pick him up, he grabs on for all he is worth. And when he sits facing me, he grabs around me with both arms and squeezes tightly. I actually just started paying attention and it just melts my heart. The combination of his doting expressions, belly laughs, and loving cuddles are making this a great phase of Justin's life.
- Justin is growing! His 18 month appointment showed that he tips the scales at 17 lbs. 7 oz. That still puts him below the 5% mark, even on the DS chart. But he has put on more than 3 lbs since his 12 month check-up. The doctor wants him to have the synegis injections again this winter, and the dosage is determined by weight, and our co-pay is determined by dosage, so really, a smaller boy is to our advantage for a while. That plus the no-walking thing makes me more than okay with a smaller Justin.
That's about it for now. These have been some good days. Thanks for all your prayers. They are making a huge difference in our little boy's life.
Wednesday, October 14, 2009
She is also working with him to put the rings on this toy. (Sorry, the picture is in the mirror...) He can do it well with 2 hands, but not with one hand. He cannot keep it level to get it on the post. That's what we're working toward.
The time goes very quickly, and Justin is becoming more accustomed to her, so he doesn't need me quite as much. Travis has adapted quite well to therapy, and he helps himself to toys and books for his playtime during Justin's therapy. (He always asks first!) He also has lots of friends there. All the therapists know Travis!
And this is a freebie: This is practicing a little at-home speech therapy. He is supposed to make noises into one end, and listen at the other end, to hear the sounds he makes. Of course, the length of the tube makes the sounds a bit different, and Justin always has to check it out to see where the noise is coming from. It's also very tasty...
Brushfield spots in his eyes:
This is a little hard to see, but in the iris (the colored part of his eyes), there is a ring of little white spots. In blue eyes it is much easier to see than in darker colors I am told. (Isn't this the cutest picture ever?! Well, I am his mother!)
He does have a little of the flattened face that is also often seen in DS, but it is not as pronounced. That is probably what made it a bit more difficult to diagnose without the chromosome test. He also has low set ears, but since that is more of a comparison issue, it's also hard to see. All these things exist in the regular population, but combined they seem to exist with more frequency in DS.
The other things are not visible: low muscle tone, loose joints, the heart defect. Some researchers say that the protruding tongue is sometimes caused by a large tongue, but I think Justin's tongue sticks out because of the low muscle tone, and it is already improving. Of course, when he gets excited, his mouth is wide open and the tongue is way out! But that's something totally different!
Sunday, October 11, 2009
I guess it made me realize that there may be some "magic" mark of 2 years that will make it easier for doctors to guess his future potential, but that's all it will be, a guess. And I will still be his mother after he is 2. And after he is 12, and 22. And I will be behind that bicycle as long as he needs me, or as long as he will let me. I am not quite sure which will come first.
But Justin is so much more like other kids than I ever dreamed possible that first day that we got his diagnosis. He has the same needs, the same wants, and the same feelings. He wants his mommy the same way Travis does. (Often at the same time as Travis does!) He gets into things he shouldn't the same way Travis does. He is ornery the same way Travis is. I never thought to ask about Travis' future potential when he was born, or what challenges we would face, or what to expect. I never had that urge to know it all when Travis was born because I knew that no one could give me those answers, yet somehow I expected the doctors to be able to do that with Justin. I cannot say that I accept sitting back and enjoying the ride all the time, but now I am much more relaxed and willing to let things go, trusting my mother's intuition more, and believing that the doctors don't always know more than I do. I won't tell them that though.
Friday, October 9, 2009
We had tons of fun visiting Ami and Uncle Jerry: We started the day with a tractor ride. Uncle Jerry and Travis took a bush that was needing to be moved over to their house from Jerry's parents' house. This is us following in the car, and you can see Travis' head sticking out a bit over Jerry's left shoulder. (I missed the "before" pictures because I was getting Justin dressed.) On the way back Travis got to drive a little (steer) and move the bucket. Travis loved this and kept asking when they could go dig something with the tractor.
This is on Ami and Uncle Jerry's porch. Justin was enjoying everything there is to see.
Justin is such a ham sometimes. He just makes us laugh! After this we went home for naps, long naps. Well, the kids napped, we ate ice cream! Jerry always gets some ice cream from work, and we had lots to sample: eggnog, chocolate coconut, irish praline, german chocolate cake, and even some of Mireille's wedded bliss! Really there were about 10 different flavors, but I cannot remember them all. I focused on the chocolate ones...
Since it was getting late when the kids woke, we just had time for a short boat ride before we pulled the boat out of the lake for the winter. (Did I mention that Jerry's parents live on a lake?) We bundled up, got the kids life jackets, and raced around the lake a bit. Travis kept yelling at Uncle Jerry to go faster and for me to hold on tighter! And he liked going in circles and spraying the water up high. Travis was a big help getting the boat backed into the garage too. He waved at Jerry to go right and then to go left. And then he helped wipe off the boat and get it unhooked from the trailer. He was a very good helper.
Poor Justin! He was all wrapped up in his life jacket, but he took the ride really well! He liked watching the water spraying too. He is so animated and social! Okay, maybe not in this picture...
The day went by so quickly. We almost forgot to get some ice cream for Travis, but fortunately he remembered and he got some right before bed. (Just this once...) He chose the chocolate ones too! We spent the next morning getting ready to go and checking out Mireille's new office. (Sorry for the lack of good pictures too. My camera battery was dying so I was trying to pace myself. Ami is going to send me some pictures and I will share them when they arrive. She promises some more wedding pics too.) Travis had so much fun! I wasn't sure I was going to get him to come home with me! When we finally got in the car on the way home from the airport, Travis asked when we could go back. That's the mark of a successful trip.
Saturday, October 3, 2009
The first one I thoroughly enjoyed although it probably will not be anything we would need for Justin. It was about auditory training, which is an aspect of sensory integration (didn't know that going in...) and not something that really applies to Justin. But it was amazingly interesting! I learned so much about hearing and listening and the nervous system and the tonal range of various languages.
We learned about the Vagus nerve, the longest nerve in our bodies, and the only one with an external port (the ear). It touches many of our main organs, so when hearing is affected, it can affect many organs as well. If the ear drum is not taut, the nerve reverberates throughout the whole body!
And many children who have listening problems (not the same as hearing problems) are left ear dominate, which means that sounds enter the left ear, go to the right part of the brain, which coincides with the left ear, and then has to cross through to the left side, the language center. No wonder messages get lost in all that traveling!
And we hear ourselves speak though bone reverberation, sound traveling through bone, which is why we sound differently when we hear a recording of ourselves because then the sound is traveling through air. We start hearing sound through the bone reverberation in utero. So we are already becoming tuned to the tonal frequencies of our mother's language before birth. The English language encompasses a certain frequency range, so we become accustomed to that range, making it more difficult to learn another language unless we become readjusted to that language's frequencies. Russian has one of the widest ranges of frequencies, which explains why it's so hard to learn!
And some children's listening problems are not caused by volume, but by frequency. This is why the vacuum cleaner drives some children crazy. He used an example of a child saying after this training that the rain didn't sound like machine guns anymore. And he said that Sting uses auditory training to keep tuned to hearing how he sounds while singing. That's actually why auditory training was developed: to train opera singers.
I cannot even remember all the cool things that this seminar included. And if this is ever something that Justin needs, we are already in the know!
We also learned about how Medicaid waiver programs work into our estate planning, reinforcement and reinforcers, optimizing health care with natural remedies, and evaluating the effectiveness of a child's treatment and education. It was a full day of information-gathering. Now we have to go back and pick out the parts that are beneficial to Justin's care.
The one other really cool part was visiting the church's area designed and built for kids and adults with special needs. They have an area for medically fragile kids, a calming room, and areas to teach kids not always by age, but by ability. There is an area for video games after lessons are over, an indoor play area as well as an outdoor play area with HIGH fences so kids cannot escape, and a shower room (with complete wheelchair access) in case anyone has an accident. There is also a room for adults and they have about 40-50 every week. Anyone with extra concerns (like flight risks or food allergies) are tagged with bright colored wrist bands so everyone knows to check them out. Some of the other children serve as "buddies" and are served almost as much as the children with special needs. The area is also open for a playgroup during the week for parents with special needs children. The church has also trained over 70 other churches nationwide to create similar areas and programs. And I think the most amazing part in that this church only has 500 members. That's a lot of minstry for not a lot of members!
All in all, it was a fun "date" for Randy and me, and we did some good exploring into some different areas that we hadn't tapped yet. We will definitely keep this in mind for next year.
Friday, October 2, 2009
- Justin's food and eating: Maybe this wasn't the month to work on this, as he has added 7 new teeth since the middle of August. He didn't want to eat much of anything except yogurt. (I think the cold helped his teeth.) BUT, in spite of that, this week I made meatloaf and veggies, and I gave Justin a fork with some small pieces on his tray, and he managed to poke them, and get them in his mouth! He did eat one or two pieces this way, and the rest I had to dip in yogurt for him to eat. (Can I just say yuck?!) So, we're still working on this, but there have been some big hopeful flashes!
- Crawling: SO AWESOME! I cannot tell you enough how excited I am! I seriously think that I will be able to report his first solo advances within this month. He is so close! He really wants to move. Yesterday's PT went so great, and I can see new moves every day. I took some pictures. Miss Penny has just one hand under him, and he was moving his hands and knees all by himself. Look how far he went!
- Travis' volume: I kind of forgot about this one, but when I did think about it I realized that I had forgotten about it because Travis was doing so well! Okay, not perfect, but noticeably better. Like instead of having to remind him 10 times a day, it's down to 5 times. That makes me happier!
- My work went so well! The boys had fun with Daddy, and while I was so sad to be gone, I was much better when I came back. I was able to do some reading, exercising, exploring, and best of all, sleeping! I have the same trips this month, so I hope they continue to be good for our family.
- And the schedule is going well also. Some things need refining, but that is to be expected. My meal planning needs to be tweeked, allowing for some nights of leftovers, and not planning several large casseroles for the same week. But the goal has merit, and we are enjoying some of the benefits. I am loving getting to the gym a bit, and Justin has done well in the kid's area. He already has an innocent young woman wrapped around his little finger. :)
I can joyfully and honestly say that I have felt your prayers. Justin is making leaps and bounds of progress. All three of his therapists love him and are very impressed by his successes. I know that I am in debt to all of you. Thank you!
This is what I bring before you for October:
- Please continue to pray for Justin's eating. We only have one more tooth to go, and I think it's close, so maybe now we can concentrate more on his eating. He was using a spoon this morning, but unless I am willing to scrape food off all 4 walls of the kitchen after every meal, we need more work on that.
- Travis is going through what I hope to be another phase of separation anxiety. He breaks out in hysterics when I leave for gym at night and leave him with Randy to put him to bed. He has been very clingy. I want to acknowledge his feelings, but he cannot tell me what is so difficult for him.
- Randy is going to have a tough month at work. He has been putting in late hours and is running on very little sleep. He doesn't get to see Justin for a couple of days at a time sometimes. And he is going out of town for a conference this month as well. Please pray for his strength and perseverance.
That's all! Thank you for your prayers. We are so appreciative!
The first thing to know is that DS is a genetic disorder. There are 3 types of DS: nondisjunction, translocation, and mosaic.
By far the most common (95%) is nondisjunction, which is what Justin has. Nondisjunction means that there is an extra copy of the 21st chromosome, and it is attached to the other 2 copies of the same chromosome. This happens prior to conception, when either the egg or sperm is produced with an extra copy of the 21st chromosome, thus when it joins, there results in 3 copies of the chromosome.
Translocation occurs when the long arm of the 21st chromosome attaches either to itself, or typically to chromosome 14. This is the one type that can result in a person being a carrier, and not actually have DS. So this is the one type that is familial, and it is just as likely from the mother as the father. This occurs in about 2-3% of DS cases.
Mosaicism is the most rare form, found in about 1-2% of cases. Mosaic DS results during the cell division process. As the cells are dividing, an extra 21st chromosome attaches to one part of the cell as it divides, causing part of the cells to have an extra 21st chromosome, and the others to have the correct configuration.
The type of DS doesn't appear to have any affect on cognitive ability or health issues.