I Guess I Should Have Explained That a Little Better

We were eating dinner tonight and Travis had finished, so he was bringing his plate and glass over to the sink. If he doesn't finish his drink, we usually put it in the refrigerator for the next meal. Tonight, I decided that I didn't want an open cup in the refrigerator, so I said I was going to throw it away. That's what I said: throw it away. So Travis heads to the trash can with his glass. I was able to catch him before he threw his drink away, and I lifted him up to the kitchen sink to pour it out. Except I was not able to get the words out before he threw the glass in the sink. Threw it. It was a plastic glass, thank goodness, but filled with, you guessed it, red crystal lite. Fruit punch. It was all over everything in close proximity: sink, counter, wall paper, cabinets, window, and curtain. What can you do but stare dumbly. He threw it away. Just like I said. There was no yelling, no cowering, but there were a few chuckles. And Travis got a lesson in cleaning up. He actually enjoyed it immensely. And next time I will explain before I lift him up to throw. He's got a pretty good arm.


(He has no shirt because we ate pizza and I learned early that pizza and Travis' shirt are a bad combination. If I want it ever to be clean again.)

And Travis dropped his sippie cup on the baby toe of my other foot, the one I didn't break last month. I promise you, it's broken. I am not going to the doctor to find out though. I know the procedure now, and if my shoe fits (it kind of doesn't) I am going with it. We'll see how I feel tomorrow...

More Therapy Success

Today was PT and Justin continues to amaze Miss Penny. She has a big thick mat, like maybe 18 inches thick and very sturdy. She uses it like we use the play table, for him to lean against kneeling and to reach for toys. (I think a picture of the mat might help this imaging; I'll have to get one next time.) He almost pulled himself up to standing to lean over to get a toy that had fallen over the other side! And then he started bouncing on his legs! And she was holding his chest for him to move his knees and hands to "crawl"...and he DID it! Several times, without screaming and fussing. He "crawled" across the entire mat (about 4 feet). And then Travis took the toy he was crawling to get, and it was over. But Penny and I both cheered for him. She has him doing legs extensions to work on leg strength. I love this: She has those suction cup balls that she sticks to the mirror and then she holds him up to kick them off. Voila! Leg extensions! I think it's great! I think she is so creative and sensitive to Justin. She talks to him just like I do, so sweet and syrupy. I think that's what I like the most.

We start our new insurance September 1 and we are having to make some tough decisions about how to spend our limited therapy dollars and our family's precious time. We are so amazingly blessed that we never were "cut off" from our PT benefits. I cannot explain it, except that God is always in control and He gives us the very best gifts. I cannot tell you how often I thank God for Melissa. She is so good to us, and she loves our kids too. Therapy can be drudgery sometimes, but I cannot explain how I feel like family at this place. They encourage me in awesome ways.

I am believing again that Justin will crawl, and sooner rather than later. And that he will talk. I videotaped the kids just playing a bit yesterday. Justin was jabbering and I wanted Miss Char to hear the cool sounds he makes. He even made the "M" sound, so I KNOW that "mama" is not far off.

Sometimes I am so entrenched in Justin's world that I forget what a typical child his age should be doing. A friend mentioned a few days ago that her son (Travis' age) is back in preschool so her daughter (2 mo. younger than Justin) is excited to have the riding toys all to herself while he is gone. I kind of stared dumbly at her. It didn't even register that she is walking and can actually RIDE on those kind of toys. Travis might get a rude awakening soon. And I don't even flinch when people ask how old Justin is and then ask if he can walk. I just say "no" and don't even explain. It just seems normal. I suppose that's odd, but also good. I just moved Justin into 18 month clothes, and as I pulled out some of Travis' old clothes for him I smiled thinking about memories I have of him I certain outfits. Some great pictures of Travis playing outside or showing me a toy. Justin's pictures will be very different. But already I have a picture in my mind's eye of him "crawling" in an outfit that I can also see a little Travis showing me a flower. And both of them have big, round bellies and gigantic grins. Brothers, but each their own person. They both give me warm fuzzies, if I let them. It's a choice every day. It's not always an easy choice, but it's mine to make. I have the power to be better because of my kids. That's what I want.

At Home Therapy

Our new OT through ECI is Miss Coleen. She loves Justin and cuddles with him often. Justin isn't always quite sure what to make of her. I think that all the therapists must just love babies since all their clients are under age 3. (Then they transition to services provided by the school system.) I had to wake Justin from his morning nap, but first I had to take a picture because he looked so cute! Sucking his thumb and cuddling his stuffed animal. Precious!



Then Miss Coleen and Justin got to work. This is a first for Justin: He is kneeling next to his play table (leaning on it) and playing with no help from us! Coleen is just holding the table so he doesn't push it away with his weight. He was able to hold himself without falling to either side or backwards! This is so good for him because he hates this position (tall kneeling, in PT/OT speak). He usually complains loudly, but today he lasted for about 3 minutes before realizing what he was doing.




Justin is making slow progress, but still progress. It helps when someone who hasn't seen him in a while sees him doing something that they haven't seen before. It gets me excited when someone else validates his progress. I was reading someone else's blog about working with her child with DS and sign language. They worked for over a year without any response, and then it's like someone flipped a switch and suddenly they couldn't teach her signs quickly enough. Those times feel so far and in between that it's so easy to get discouraged. I want to be able to look back and remember those highs during the lows. I pray that Randy remembers too, so we can support each other. Today was a good day! We're always praying for more.

Another Visit to the Cardiologist

We were back to cardiology today. Just a check-up, and nothing was out of the ordinary (for Justin). His heart is normal sized, his EKG reads normal and his heart sounds like it should (given his slight lack of cooperation- he is 16 months old and not fond of people messing with him, and screaming and trying to listen to heartbeats don't go together well). The doctor decided we can now wait 9 months before another visit, and that we don't need another echo unless she hears or sees something unusual. Justin is at the age of needing to be sedated for an echo, and she doesn't like doing that if it can be avoided. I totally agree, but I am slightly concerned that we never heard anything before the original echo that showed massive holes that needed surgery quickly. She saw my concern and agreed to schedule an echo, but she would listen first and if she doesn't hear anything, we'll forgo the additional tests. I am good with that, given that I know we will take another peek when he can sit still long enough to get some good pictures in the echo.

Justin's Breakfast

We usually feed Justin baby cereal and milk for breakfast (still trying to make sure we get liquid in him), but I have really been working on getting Justin to eat finger food. So I decided to make pancakes for breakfast today. He loved them! He ate nearly an entire large pancake! He picked up the pieces and ate them just like a champ. He also ate some applesauce, which is one of his favorites. When daddy picked him up his belly was gloriously thumpable! Just like a melon. I am glad we found a winner.

Travis' Many Outfits

Travis has an amazing imagination and he loves to "dress the part". Here are some of his latest outfits, with the accompanying translations:

This one is obvious: Travis enjoys wearing my shoes, and this time he added the purse, which as we all know, makes the outfit!

This is his fire suit. Travis is fascinated with firemen and puting out fires, so this is his fire suit. He wears his gloves and backpack, along with the hat and for some reason a pillowcase, which has to be tied up with a ribbon. I only report, not explain. Even Justin has no idea!

There's something about night time that puts Travis in a strange mood. Maybe it's Daddy being home, and having another person for whom to perform. Whatever it is, it's all CHEESE! These are Travis' pajama shorts, which he pulled up as high as he could, and then he called himself Superman. Randy and I both scratched our heads at this one...

Easy Street

I was driving to therapy a few weeks ago, praying as I went. I think Justin must have been teething or he had a stuffy nose because I was praying that he would feel better. I was struck by how many of my prayers are rooted in wanting things to be easy: take away our pain/sickness, allow us to have a good day, keep us out of conflicts, etc. Sometimes at the end of the prayer I might throw in a little, "But help me to do your will while I go along my merry way." I somehow expect God's will for me to be only easy all the time. Nothing that would make me stray too far from the ordinary. Nothing that would be too difficult.

One of my friends has a fabulous quote by Erma Bombeck on the top of her blog: "When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, "I used everything you gave me." That reminds me of a sermon by a former preacher at our church. He said that he envisions arriving in heaven and God handing him a pamphlet and saying, "This is the pamphlet of the things you did for me." And then God will lead him into a huge room filled with books lining every wall from floor to ceiling. (SO my kind of room!) And then God says, " This is the library of things I had planned for you to do for me." I do not want that to be how I want my arrival in heaven to be, but I fear I may be headed that way if I continue to ask for the easy was out of every situation.

A book I recently read said something to the effect of, "Sometimes the hardest road to be on is the right one." God never said that following him would be easy. It certainly wasn't easy for the prophets and definitely not for Jesus or the disciples. So why do I keep asking God for that?

In all of my looking back at how Justin's life has been so far, and how God has walked with me, I know he has prepared me for each step of it. Now as I look forward I worry that the people and situations I encounter are preparing me for something else and already I find myself asking God to take it away. Justin is more prone to leukemia and celiac disease and when Justin was in the hospital recovering from surgery I had a conversation with a friend about not wanting Justin to have leukemia. He wasn't even over heart surgery and already I was telling God what I didn't want him to give our family! I feel as though I am balking at the preparation for the next "thing" and it's not even here yet!

I don't think it's wrong in any way to pray for good things. And I am certain that God wants me to share the deepest desires of my heart with him. But I fear that when all I want is the good and the avoidance of anything difficult that I was not truly walking the path that will bring God the most glory. I am afraid that God will actually give me what I want, even though it's not what he wants for me. I fear that I may pray away God's best and happily accept God's okay. I am putting limits on God. I know in my mind that God and I can do amazing things together. We already have! But if I don't want any bumps in my road, how can I say that I trust God and believe that his will is the very best?

I have been working red eye flight almost every month since Travis was born. I would leave for work at about 4 pm and get back home at about 7 am. On the outbound flight the passengers would be awake and we would serve dinner. On the way home, almost everyone would be asleep before we even took off. I loved those flights home! I could do all kinds of things that I couldn't do at home: read, write letters, hear myself think. It was glorious. Due to cutbacks, we aren't flying those flights anymore and now I have to work while it's light outside! So no more down time at work. I have been feeling like that was my time of preparation. And now I am in the light and I am expected to use the talents and the knowledge God has been pouring into me during that time.

I want to want to struggle with God through whatever he desires for me, rather than go along my merry way, blissfully ignorant to God's call on my life. Sometimes, that's where I have to start, praying to want to want. Sometimes it's even more "wants" than that! But if I truly desire to serve the God I love, I have to be all in, bumps, bruises, cuts and scrapes, if I expect the rewards and glory that He promises.

Back to the ENT

We visited our friend the ENT this morning. It was a good visit, and I was even happier when we left. She said that Justin's ear canals are growing, which is awesome news. She can see through them now, not quite to the ear drum, but closer every time. She doesn't see any need to put in tubes just in case (which I completely second!) so we will just watch and see if anything problematic comes up. She did order another hearing test, which we have scheduled for next month, and if that comes back normal, we are released from her unless we have a problem! One less doctor with one less co-pay would be celebrated!


I am glad for less appointments and doctors, but that means more responsibility falls on me. Initially that worries me, because I am afraid I will miss something, but then I think about Travis and I am not worried about him. Not just because he can talk and tell me when he is sick, but because I am with him and I know him. That gives me assurance, and I am praying for that same assurance with Justin.

Evenings with Genetics

One of the local hospitals has been sponsoring these "Evenings with Genetics" Seminars for the past few years. They have spoken about autism, heart defects, the genetic study into AIDS, and lots of other topics. Of course, when we heard they were speaking about "Updates in DS" we knew we had to attend. The seminar was at the Children's Museum, which was really fun since it is newly remodeled, and we had a little social hour before to talk with the speakers and the other people attending, which of course was many of the members of the DS Association.

They talked about some of the general things about DS and then some of the new research that is up and coming in the field. I didn't realize that DS has only been understood to be a genetic disorder for 50 years, which they said is relatively recent. There is some research being done concerning proteins and the way our synapses send messages. The way Randy interpreted for me was that people with DS seem to have too much "sending" protein, so the "receivers" cannot respond quickly enough. Everything is still in testing phases, so nothing will be available quickly. That's the dumbed down version as I understand it. The doctor did a very good job speaking to us, until he got to that part and my mind just went numb. I am glad we got the DVD so that I can watch that part a few more times to understand it after the 5th or 6th time.

Also, the president of the DS Association spoke for a few minutes. She talked about how she found out about her son having DS 20 years ago. The doctor came in and said the usual, "We think your son has DS." (By that time they are fairly sure...) She said, "Well, fix him." He looked at her strangely and said that he couldn't, but that there were places that could take babies like him. Her husband just about leaped over the bed to get to him and declared that he was their son, and there was no way they were leaving the hospital without him. The doctor sent the social worker in with some information for them, and the first book they read about DS had a picture of a boy on the front, behind bars in an institution. She went home and cried for 30 days. And then she pulled herself together and started raising her son. She is a fabulous mother too, and in some ways she is the mother of all of us. She has worked so hard to make life better for all of our children.

We had a good group there, and so many babies! It was probably the liveliest "Evening with Genetics" they have ever had. I am just guessing here, but I think next month's topic: "Understanding the variability in Noonan, Cardio-Facio-Cutaneous and Costello syndromes" won't get quite as big of a response!

Medicaid Waiver Workshop

Randy and I attended a Medicaid Waiver Workshop this morning. Our local DS support group sponsored the event and brought together people from the various departments to explain what services they offer and why we need to get on the interest lists. The lists are about 7-10 years long, so some major early planning is required. It was helpful, but massive information overload! There is a lot to wade through, but the good news is that so far we are doing well. We are on all the lists we need, so now we wait and confirm our place annually to ensure we are not accidentally dropped.

We did meet someone who has a daughter with Phelin-McDermid syndrome, which is a missing portion of the 22nd chromosome. She was just diagnosed this June and she is 5 years old. Her mother said that she functions on the level of an 18 month-old. She has been to 5 different doctors who couldn't determine a diagnosis, and finally a school therapist suggested that she visit a geneticist. So while she has been dealing with this for several years, this is just the beginning of her understanding what she and her husband are facing. There are only about 400 documented cases in the world, so she is feeling very isolated. Since we have had several people with other genetic disorders come to the DS support groups, I encouraged her to come to our meetings. We have so much in common; I hope we can encourage each other.

New Therapy Tricks

One of the tools we have been using in therapy is a z-vibe. It is basically a souped-up electric toothbrush, with interchangable tips. Some are plain and round, and others have rubber points for chewing and rubbing. It is supposed to make him more aware of his mouth and the different ways he can make shapes and noises. I am just guessing on this, but that is what it seems to do for Justin. Our other therapist had one and I really thought it would help Justin if we had one at home, but it seemed too expensive of a purchase. But now they come in plastic instead of metal, and they are flavored too! Ours is berry flavored. It just arrived this week, and Justin is enjoying it.

You can also see that we have started taping Justin's feet. It kind of looks like he has his ankles wrapped. This week was the first time to tape his feet and I am not sure it will work for longer than a day. His feet are so small that the tape rolls too easily and doesn't stick as it's intended. It might be better if he were to wear socks, so I might try that next week. He also has his back taped, and I think that makes a huge difference in his posture. He doesn't seem to slump over near as much. Yeah for the tape!

A Visit to the Opthomologist, and a Few Other Things

One of the things on our "to-do" list, courtesy of the Down syndrome medical lists, has been to visit the pediatric opthomologist. I have been putting it off because 1) there is a conflict between vision insurance and medical insurance about who wants to cover such a visit (no one wants to cover it...) 2) it's difficult to find a pediatric opthomologist who takes our insurance and will see children with DS and 3) he doesn't seem to have any real problems with his vision (from my untrained observations). The last time I took Justin in for "just a check" they decided he needed open-heart surgery. So I thought, why look for more problems? But we were chastised in May when we went to the DS Clinic for not having attended to this aspect of his care, so I made the effort and worked though 1, 2 and 3 and got an appointment.


And let me tell you, I got what I expected! He apparently has a congenital condition, not related to DS called myelinated nerve fibers in his left eye. It is usually asymptomatic, but it can cause extreme near-sightedness or crossing of the eyes. There is nothing that fixes it, but he will need to be observed to watch for any decline. If it does cause symptoms, they can be addressed at that time. So this is another doctor we will have to visit in 6 months, just for a check-up. Justin really was a trooper, getting his eyes dilated and then having to sit through swimming lessons in the sun!



On the Travis front, he is excelling in swimming lessons. He managed to jump off the edge and get back to the wall with no help from the teacher. A first for him! His one major issue is still breathing. He can only swim as far as he can hold his breath. He doesn't lift his head up, and if he does, he stops kicking and using his arms, causing him to sink. The teacher taps on his head to remind him to breathe, but still, no big breakthroughs.

I am considering changing around some of Justin's therapy sessions, and I may add OT at the same place Justin receives his other therapies. When I spoke with the receptionist (my major advocate and insurance guru) she said that one of the OTs has already called "dibs" on Justin if he ever adds OT there. Apparently he is in high demand! Another warm fuzzy. That really helps get through my week.

Yesterday we had 2 neighbor boys with us for the day. They are 5 and 7 and they did so well playing with Travis, and even Justin. I have never been more sweaty and tired at the end of the day though! We played outside for several hours and they wanted me (holding Justin) to play tag and baseball with them. It was really lots of fun! But we all got baths before we went to church last night. And as a special treat the boys' mom brought Travis and Justin some really yummy cookies. You know, the kind with lots of icing heaped on, in really bright colors? It was all over Travis' hands and face and he almost needed another bath after eating it. But it was so worth it.

Multitasking

I have always considered myself fairly good at multitasking, but it turns out I am just more blind to my inadequacies! Today was the first day since Travis was born that I actually considered scraping everything (dinner, chores, the messy house) and taking the kids out for a drive and to eat dinner. It has been dark outside all afternoon, and it thundered just enough to keep Justin from napping, but not one drop of rain has yet to fall on our yard. So I had to water the lawn, and that is all that kept me home this evening. I did consider it though. I even have a coupon for Chick-fil-A for a free kid's meal that would have pleased Travis to no end. Another day...

So I was preparing dinner, washing clothes, feeding Justin, oh yes, and watering the lawn. Travis was unloading the plastics cabinet for the first time in...a year maybe? He was asking me questions and I was giving the usually response, "Uh-huh, sure..." and not really listening. When Justin finally had calmed down, dinner was coming along, the loads of laundry had been changed, the lawn was getting watered I turned around and Travis was playing in the refrigerator and freezer! He had them both opened and he was mixing "juice" in the plastic containers and then putting them in the refrigerator or freezer to cool. Every inch was crammed with empty containers. I racked by brain and finally I found it: " Mom, can I play in the refrigerator?" "Uh-huh, sure..."

I seriously said that??

Baby Sports Bottle

A couple of months ago Miss Lucy brought us a honey bear drinking cup that she made for Justin. I think they sell them through various therapy supply web sites, but Miss Lucy was always great at getting things for us other ways. She made this cup from a bottle of honey shaped like a bear and some tubing from a hardware store. It is supposed to help Justin learn to drink from a straw, which strengthens the muscles for talking. It especially helps with the "O" sound. (Makes sense!) Well, Justin didn't like it very much, so I put it away and used the other cups we had. I decided to try it again this week because Justin seemed to be trying to suck his vitamins out of the syringe. I was pleasantly surprised that Justin did so well! He doesn't even dribble very much, although he still spits sometimes. Until he learns how to suck the water out, we can squeeze the bear to get the water in his mouth, just like a sports bottle. Travis thinks this is beyond cool, and he says that when Justin grows up they can trade cups and Justin can have his cups, and Justin can have Travis'.

You can see in the pictures that already Justin is forming the "o" shape with his mouth, although he isn't sucking yet. Also, we left the top on the bottle so we can pull the tubing/straw out and close it for when we need to pack food to go out. I really would like for Justin to try to lift the cup himself. As you can see, he is perfectly content allowing us to lift and hold the cup for him to drink.

Tremendous Accomplishments

Justin is growing in leaps and bounds and his progress astounds even me. I say that because I get so lulled into believing that he is doing better, but feeling I have to convince others because it is such minor progress. But we celebrate the little things at our house, so I share them with you:

Some switch in Justin turned on recently and he is doing SO MUCH better in standing! He is a very strong little boy, but he hides it so his mommy will carry him forever. It only takes 2 hands to get him to stand, instead of the 6 we have been having to use. He still likes to pick his legs up so you think he is standing, and it turns out you're just holding him in thin air. But he can stand! Randy was holding him the other day so I was able to see it for myself and take pictures. Usually it's me doing the holding and since Travis hasn't perfected his photographic skills we are forced to wait for Daddy to come home at night for real pictures. We cheered so loudly Justin got scared! It probably didn't help that he was tired, but it's the first picture of him on two feet! OK, maybe more like 10 toes, but you understand.

And he continues to awe Miss Char. She said she would like to have 25 Justins she is so proud of his progress. She watched me "talking" with Justin during therapy and she was so pleased with his communication ability! He has started making the "O" shape with his mouth (like for sucking) and babbling the "E" sound which is tighter than the "A" sound, which is very loose and easy to make. She thinks I would make a good speech therapist when I "grow up". Hmmm....

We had our first session with our new Keep Pace therapist (the new Miss Lucy I keep telling Travis...) Her name is Coleen and it's going to take a while for her to catch up with Justin I think. She was so proud of the things she was able to get him to do, things he's been doing for a while. It will definitely take Justin some time to warm up to her. I am grateful for some new techniques. Justin doesn't like showing off, so she will be slow in learning his ability. He sure can stiffen those legs! She tried to bend them to get him to crawl and he wasn't having ANY of that! He kept crying and looking for me to save him. That is the very hardest look to see on your child. I want to reach out and cuddle him close to me and tell him that I will never allow that mean woman to touch him ever again. And yet, I know that it's best for him to continue to struggle. I wonder if that's how God sees me just about every day. When I whine to him about how hard something is, do you think he has that same pull of wanting to save me, and yet knowing that he must leave me go through the pain to grow and mature? I wonder sometimes.