Wordless Wednesday: Fireman Justin

Look at Me, I'm Standing!

Justin is standing more and more every day.  He is so proud of himself and he really wants to stand all he time.  Today at therapy Miss Penny said that he didn't even want to sit down!  He stood up for about 70% of the time.  He stood up while holding a bat and then took two steps to walk closer to the balloon she had hanging up and then he hit it with the bat.  He is walking behind a push toy and he stops when he sees that he is going to run into something and he moves the toy and straightens it so he can continue to keep walking.  He can walk all the way from our dining room though the kitchen into the living room!  It's amazing!  I sometimes have to stop and watch him and bask in his accomplishments.  He is improving by leaps and bounds and soon enough he'll be running and jumping.  Last night Justin walked from the parking lot into the building.  He did a few face plants, but he struggled back up and kept going.  Sometimes the walker gets away from him!  Times are changing in our home.  The last few "baby" things are slowly falling away.  Exciting and scary too.

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.

Justin's Tricks

Randy's mother always asks what Justin's newest "tricks" are, so I thought I would share some of his progress. We had Lucy back today, and she was SO impressed with him. I was excited for her to come so I could show him off!

• He rolls like a CHAMP! It's actually funny sometimes. To go from his stomach to his back, he puts his arms under him and pushes his butt in the air and turns his head opposite the way he wants to go, and then his body just FALLS that way. And he especially likes to do that when his therapists are trying to get him to do some stomach exercises (like reaching and pushing up on his arms.)



• He got his second tooth today! For real, and it's the mate to the one he has, which is even better. This is weird but, Travis has very weirdly shaped toe nails (they kind of curl down) and they are hard to cut, but Justin has very pretty toe nails. I kind of wonder if Justin will end up with the good genetic stuff from each of us that is not affected by the DS and Travis will get all the "bad" stuff. Wouldn't that be odd?



• Justin can sit for about 3-5 mins. His stamina is great, when he's not tired. Otherwise he folds himself in half and cries and pulls his socks off. I know I put is left sock on today at least 25 times. Not even kidding.



• We are working on "supported standing", and he is pushing as he stands. At first it took two of us to keep his feet on the floor, his legs straight, and his head up. If we lost focus, he would pull his legs up and he was just hanging in the air. Very funny!



• Also, we are working on kneeling for crawling. This is SO hard to do when 1) He is tired and 2) The person who is holding him only has 4 limbs (pretty much every person I know!) To do this a person must 1) be on their knees 2) face him away from you 3) use your knees to hold his knees together 4) support his chest with one hand 5) use the other hand to keep both of HIS hands on the ground (you see how you need more than 4 limbs, and they are all in use!) When he is tired he wants to suck his thumb, so he lifts one hand, and we are still holding a lot of his weight, so sometimes we don't notice that one of the hands is not down. And while he prefers his right thumb, his left will do if you take away the right!



• His hand strength is improving. He doesn't hold toys for very long, but the teething is making him WANT something in his mouth, which helps our goals. He would like for me to hold a toy in his mouth FOR him, but I won't, he has to do it himself. And he can transfer a toy from one hand to the other, and sometimes reach across midline for a toy.



• He is eating a bunch! And the people who haven't seen him for a while can tell that he has grown. Today I finished feeding him and he cried and I could tell that he was wanting MORE. We are working on signs, but I got the message without the gesture. Travis has "more" and "all done" down pat, but Justin not so much.

We got word that insurance has a limit of 60 visits per calendar year, which at our current rate will last for 6 months. I am not sure if we want to cut back to extend our insurance, or risk the appeal process to get extra therapy for medical necessity. To me it's no-brainer, but it seems that's what the insurance company has. Just kidding! I am so thankful for insurance, after the bills for heart surgery and for the synegis shot! Yikes!

Justin has been driving his car and he is a very laid-back driver. The material is slick and he slides down until he is like this.

And then Travis took it for a spin:

My Christmas Gift

I wanted for Justin to be able to sit up on his own for my Christmas present. It wasn't really all that impossible, but I still really hoped it could happen. He was doing SO well, but I couldn't get a picture for fear he would fall when I was looking through the camera. And then I got this picture:




He's kind of leaning on the toy, but not really. He is doing FANTASTIC! Don't ask him to watch you move an object over his head because then he falls for sure, but if he just sits, he's good. And it's not just balance until he falls. When I am holding him to practice, I can feel his muscles "firing" (a favorite therapist word!) to correct himself when he begins to fall. It's very cool! I am not sure what the exact time limits would be to claim sitting, but he is darn close! And he almost has the second tooth in front too! Sitting AND two front teeth! Who can't claim a Christmas miracle?

And here's the boys Christmas Eve, on the hearth. There are some pictures of them looking at the camera, but I thought this one was better. It kind of looks like they are plotting to catch Santa Claus! (Did I mention that Justin LOVES his thumb??)

We Have a Tooth!

I told you we would have a tooth soon, and today it finally broke through! This morning we were at speech therapy so we were messing around in his mouth, and nothing, but by lunchtime I was playing with him and he bit me! With his new tooth! Yeah! I wanted to get a picture, but it's hard enough to feel the tooth given Justin's tendency to have his tongue out. It just would have been a picture of Justin smiling with his tongue out and you would have had to take my word for it anyway.

It seems silly, but dental problems are a potential issue with DS. I have read that it is very common for teeth to come in late, and in a random/uncommon order. Justin's tooth is one of the bottom front, just like it "should" be, so that is wonderful! Travis got his teeth on the early side of the curve, so I didn't know what to expect with Justin. The books tell you all the things to watch for, but it seems to me that the other 22 pairs of genes ought to have some impact on things. And Randy has terrible teeth, so I hope that doesn't doom both boys!

Picture with Santa

I took the boys to see Santa today. Justin was fine, but I wasn't sure Travis would go for it. He wanted me to be in the picture too. So I dressed for it, and at the last minute Travis agreed to go it alone, with Justin. Yeah!

The Buddy Walk

Today was the Buddy Walk. The weather was a bit chilly, but it was sunny and overall very beautiful. We had to bundle everyone up. Justin rode in the snuggly pouch, so we didn't put his t-shirt on him. I had to find an alternative outfit. I thought this was appropriate. The shoes make the outfit.

And this was how we walked. Well, I walked, Justin slept.

There ended up being over 2000 walkers, the most they have ever had! Our team was super! We had 41 people walking, plus a bunch of people who donated. This is our entire team.

We walked around the theater district and the Bayou. It really was lovely weather. The kids had so much fun running around. Our team came in last, since we stopped to take a picture. This is our team coming down the hill. Justin spent some time talking with the team. Actually, he just sucked his thumb and was passed around.

All in all, it was a really good day. We plan on making it an annual event. It meant a lot to us to have so many people come out and support Justin and our family. We have many, many years ahead of us, and I am overwhelmed looking at the picture of our team. So many people walking with us, today and always. They had signs along the route with facts about DS, including the prevelance of DS. There are about 5,000 babies born with DS in the US each year. Justin is one of the 5,000 for 2008. Someone off-handedly mentioned that we ended up being one of the families with this, one of the "lucky" ones. Today, I felt VERY lucky indeed.

Justin's Progress

Justin was weighed this week and he is up to 13 pounds, 10 ounces and 25 inches. So good! (And Travis is now at 29 lbs. 2 ozs. and 37 ins.) He is eating well and getting heavier.

He can clap his hands. His trunk muscles are getting stronger and while he cannot quite hold himself up while sitting, he is close! When he falls down, it is a slow, controlled fall. When I showed his PT, Penny, this week, she was very impressed. And I was so proud! Penny has been working on standing just to get the muscles to start working. She holds his feet and legs and I get his attention to lift his head up. After she holds him like that for a few minutes, she tries to get him to try to support himself (weight bearing on his legs). He always does much better right then because his muscles are remembering the feeling. (Like holding his mouth closed after eating since he has just been using those muscles.) I really like Penny, and I hope Justin does too.

Since I have all my teeth, and the economy is in the state it is, I have decided that all I want for Christmas is for Justin to sit up on his own. I have been told it is a lofty, but attainable goal. We have less than 3 weeks, but we are working on it!

Face Time with Daddy

Randy has been working a lot and since the hurricane, traffic has been so bad that he has to leave by 6 am in the morning to make it to work by the time he needs to be there. And some days he doesn't get home before the boys, especially Justin, go to bed. When he is home, Travis is all over him, but he doesn't often get much time alone with Justin. So today, they talked.

They made faces.

And then Justin got tired and needed to rest.

And we bought a car today! Well, Randy bought it. I actually haven't seen it yet. When I told Travis that Daddy couldn't kiss him goodnight because he was buying a car, he asked excitedly if he could buy a firetruck with a siren (and made a siren noise) so he could drive it, and Mommy and Daddy too, and go up the ladder and spray water. He was SO excited that I had to close the door to his room so he would stop talking! I am almost scared to show him the car we DID buy. Because while I haven't seen it, I am pretty sure it's not a firetruck...

Pictures and More

I forgot to mention that another one of the things we talked about with the social worker on Monday was about which Medicaid waiver lists we need to get Justin's name on. The lists have about an 8 year wait, so we need to get on them now to make certain that we get the benefits when we need them. One list is only for Texas and the other is only for our county, so if we move from either we go back to the bottom of the list wherever we move. These are state programs, so every state is different. For example, in Maine you can receive benefits the next day, but in Oklahoma, the wait is about 7 years. And the more we talked, the more I noticed that the "blue" states get more immediate help, but the "red" states tend to have lists, long lists. Just an observation. So we almost have to decide where we want to live for the rest of our lives, if we want some of these benefits. I am supposed to keep a spread sheet with all of the numbers and contacts I have with each of these programs. We are about number 23,000 on one list, and each year we get a letter with his number and I have to verify we want to remain on the list. So the file cabinets I have will be filled VERY easily!

And we had pictures taken today. We tried last week. That says it all. This week we had more success, and this is my favorite shot of the day:

I still cannot volunteer that Justin has DS. I don't know why! The photographer was perplexed why he couldn't sit up and she asked if he was premature. I just said no. I do know there will be a time that it is clear, so I continue to bask in the joy of ignorance. I spoke to another woman whose daughter is a couple weeks older than Justin and her daughter is very clearly DS she says. And people are always coming up to her and talking about their experiences with DS. I guess some of that would be okay, but I think I would have to ask God to filter that for me and to give me the words to say to those people. I believe that God can do so much more than we ever ask of him, and I think that is one of the things I need to start to pray about.

I also got some pictures of the boys together. A bit more of a challenge, but there were some good ones. This one is a weird angle, but it has Justin smiling a bit more. I was exhausted from making Justin smile. I wish the little feather-on-a-stick worked like it does on other children!

And Justin rolled over the OTHER way! On Friday we went to the doctor for the synegis shot and while we were waiting Justin rolled over on the exam table! Back to front... and now he has done it another time too. And he is doing front to back again since surgery. I am one proud mama!

So tonight Randy took Travis out and I put Justin to bed myself. We had such a good talk before he went to bed! We laughed and smiled and for the first time be really belly laughed! It was amazing. Almost makes me want to cry. I do have to work so hard to get responses that when I do I want to enjoy them. Justin is so fantastic, but it is incredibly easy to get lost in comparisons and by-gone wishes and dreams. I love that Justin is so attached to me, but I know I am on the road to be an over-protective mother. I think I want to stray down this path a bit longer though. The rewards are still quite nice.

Down Syndrome Clinic

We headed down to TCH one more time for our appointment with the Down Syndrome Clinic. It was nice with the time change not to be driving the entire trip in the dark! We met with several doctors, physical therapists, occupational therapists, a social worker, a speech therapist, and...I think that's all. Oh, wait, and a nutritionist. It was quite comprehensive, but nothing totally brand new to us. They estimated him to be at about the level of a six-month-old baby, which given his adjustment for surgery, is right on target. Now, we have to keep him progressing so the gap doesn't widen. They recommended that we increase his therapy, which we knew they would. Right now he only receives twice a month therapy (OT) and they recommend twice weekly OT, PT, and Speech therapy. Now, we just have to determine where the line is: Where is the point where Justin gets enough help that he progresses and we are able to continue working at home, without our family going broke in co-pays (that's $150/week if we do it all) and it taking a toll on Travis and the rest of our lives? We're not sure yet. Since our insurance changes in January, we have a little time to scout out some other therapy options and then start the new year with the changes.

We were optimistic about the appointment and it was positive for us. Justin is progressing and while there are things we could be working on, we're moving in the right direction. There's always so much information to process, and they gave us ANOTHER packet of information to read so we have more to try to fit in our heads somehow. Is it possible to hire someone to read and then teach it all to me? I have a stack that is about 6 books high right now, and they are all as interesting as textbooks. I love to read and I want to read, but the extra hour we got this weekend did not cut it!

Genetics Follow Up

I am good at going to all of Justin's appointments. I even went the the first pre-op day of testing all by myself. But I have not been looking forward to this appointment. It's where it all began. The other parents with whom I have spoken remember day or the way that they found out about their child having Down syndrome. And I remember that too, very distinctly, but I remember this day too because it was the day that really wasn't supposed to be anything. We didn't tell any family because we didn't want to worry them for nothing, and in my mind, this was just one of the things that we had to check off our list. This was a nothing. If ever I wanted anyone to laugh at me, this was the day. I wanted the doctor to say that I was just a crazy over protective mother.

We took EVERYTHING with us to the appointment. We had the stroller, the baby carrier, 2 diaper bags, toys for Travis, and snacks for Travis. We hauled so much stuff in with us they probably thought we were moving in! And the side of the hospital that has the genetics clinic overlooks the new hospital they are building and at that time, it was not even a complete hole yet. Travis loved looking at all the equipment; it's his favorite to this day; and I prayed that we would never have any reason to see that building beyond that day as it was being constructed. The geneticist we saw is so wonderful. He is so personable and helpful and willing to listen. After his exam he said that he could see what we saw, and for the first time he actually pointed out the traits that Justin has that are Down's markers, but he also said that these things exist in the general population, so it's not definitive without a genetic test. He said that it could go either way. So we had the tests. There were actually two, one for Down specifically, and one was for some other genetic anomalies that he also considered to be possibilities. So we had to get blood drawn. I sat with Travis as he ate his snack as the nurses debated how much blood they could take from Justin given his weight. And then we were sent off to wait. At that point they said 50/50 he has Down syndrome. When we left there were some fish tanks that blew bubbles from the bottom and plastic fish floated in the bubbles. Travis didn't want to leave, and I said that we would come and see them another time. I wanted to take those words back as soon as I said them. I didn't want to go back EVER! But we were back, 2 weeks later, to hear about our son's diagnosis and to understand at least a little, what it meant for us.

So today, we were back where it all began. The hospital is coming along nicely (our room during Justin's surgery was actually facing the construction site, so Travis was able to watch the trucks whenever he visited) and the fish are still bobbing along, and we are a bit further down the road that God has put us on. We don't understand much more about what this all means, but we are more confident that God will carry us through. We figured out that the appointment today was more for us than for Justin. The doctor said that he felt like he kept dashing our hopes because first he said that he didn't know about the DS and then it was, and then that he didn't hear a heart murmur, and then it was and that it needed surgery. I think today was to end on a high note, and to ensure that we are doing the things that need doing to care for Justin. He just watches out to make sure that we know what's coming and what to consider for his future care. We have our appointment at the DS Clinic on Monday and he said that they kind of overlap purposes, so we don't have to see him anymore, which he is sad about, because Justin is so cute! Yeah, we know!

I know this is a bit random. Thoughts have been floating through my head about this for a while as I recalled that day and I just can't explain my feelings. Maybe they will become clearer as the years pass. Right now it's still raw. I just know that I love my baby and I love the one who sent him to us. I think that's enough for now.

ENT Follow Up

We were back at the ENT this morning. The appointment went very well! Justin is nearly 13 pounds, up from his post-surgery low of less than 10 pounds. And his ENT thinks he is doing wonderfully! I think she is my favorite doctor, because she is so encouraging and so enthusiastic about everything he does. She was able to see his left ear drum, barely, so that is good for checking fluid accumulation and potential ear infections. She did ask if he had been sick, and I was able to say with pride that he hadn't (just wait...) so we have set a return visit to the audiologist in 6 months for another hearing test, "after he gets sick a few times and he gets some fluid on those ears". What?! We aren't going to get sick! Not on my watch! (just wait...) I was very pleased leaving her office this morning.

And then I went to Ladies' Bible Class to get Travis where I had sent him during our appointment. At dinner last night he started saying that his feet hurt, and they looked a bit red, but I couldn't see anything, so I put some cream on and sent him to bed. He woke up in the night saying that his feet hurt and I had to put more cream on them. This morning he said they hurt and I gave him some benadryl because it looked like a rash. I picked him up from class and I had someone else look at his feet, and she said, "Oh, that looks like hand foot and mouth disease." What?! We aren't going to get sick! Not on my watch... So there went all my pride. And it was replaced with fear for Justin. But if he was exposed it's already too late. Now I can only pray that he doesn't get it, because there is nothing I can do beyond keeping them apart. And reading on-line, it says that a person can transmit the virus even after visible symptoms are gone. So, we are back in seclusion, more or less. Travis sucks his thumb, so there is NO WAY I can prevent his saliva from being transmitted to anyone else. It is nearly impossible to stop him from sucking his thumb while he uses the bathroom, much less while he is playing. You know, we missed last Halloween when Travis randomly threw up on our way to the Pumpkin Patch party at our church. And now this? I even had a good costume this year! I will still evaluate, but it looks like we are home bound for a bit longer... And I apologize to anyone else we may have infected, completely unknowingly.

And a deep thought: The doctor's office that we were at this morning is the satellite office for all different specialists, including therapists, so there are no regular pediatricians at this office. It's the place we hope to be able to visit the cardiologist when we are released from TCH so we can avoid the hour drive and $10 in parking. So everyone who is there has some specific issue, with varying degrees of severity. While we were waiting, another little girl with DS came in with both her parents. She was about 18 months to 2 years I would guess. I kept snatching quick glances at her to see what she was doing. We were called back fairly quickly after she arrived. I hope that they weren't put off by my peaks. I am sure they get looks a lot, but my look was for a different reason. I hope that I remember that not all looks are meant to be gawks. I have started thinking recently about the other "firsts" that Justin will experience: the first time a peer teases him for the way he does or can't do something, the first time people gawk at us at the park, the first time he isn't included in a game because no one wants him on their team. I have been pondering this for a while, and I realize that almost every child will have these "firsts", but I think Justin's will continue more frequently. And I think they will bother me more than Justin. I hope they do. But I have been praying that I am prepared for them. That God will give me the words to say, or the blinders to ignore it, or the right actions to protect Justin, and also to let God shine through. Will Justin be hurt? Probably. Will I be hurt? Definitely. But how will we respond? And how will we recover? I hope that is the more crucial piece. I ask God regularly to place in my mind the thoughts that need to be there, for preparation and for planning. I cannot consider Justin's entire life, but I want to focus on the part that is now and just ahead, and let God do the long range planning.

First Food

I did it finally. I introduced Justin to food. So it was only oatmeal, but it still was a big step. I have been putting it off because it's easier just to nurse him, and his low muscle tone also leads to potential constipation issues. It was one of things that I did not enjoy with Travis. It took a while before he really liked food, partly I think because he did not like the rice cereal that all the books say you should use to start. I distinctly remember Randy coming home one evening and I told him that feeding Travis was the worst part of my day. We did recover and Travis is a marvelous eater. So I skipped to oatmeal with Justin, and that seems to be a big hit! I mixed it with prune juice, like we did for Travis, partly for the potential constipation, and partly because it's easy. By the end of the "meal" he was actually reaching his head forward to get the spoon in!




One of the issues with Justin is that I cannot just wait for him to learn things, or assume he will catch on, I have to be proactive and teach him the right way to do things, so he is using the correct muscles. This affects the way we teach him to eat. When I spoon food into his mouth, I am tempted to scrape the food off on his upper gums, just to get it in his mouth. Instead, I am supposed to encourage him to close his mouth around it and exercise the lip muscles to pull the food off. I am just trying to keep his hands out of his mouth right now! I am grateful for the HUGE bibs that cover everything that my cousin sent me. He needs as much coverage as possible. I washed 2 of my shirts, a bib, Justin's outfit, and his crib sheet today from all the messes. Ok, one of my shirts was my fault, but the rest was Justin!

Cardiology Appointment

I am sorry for this being 3 days late, but no Internet and my attempts to keep Justin healthy make it difficult to post in a timely fashion.

Justin's appointment went very well. The doctor removed him from the lasix and we are down to only enalapril (bp med.) Yeah! He is back up to 11 pounds after losing more than a pound in the hospital. His bp was great and she said that she could only hear a minor regurgitation ("murmur"). It could be because of the meds. so that could change, but we are encouraged for now. The more minor or undetectable the murmur, the better the fix and the less likely additional surgery would be. Justin is having some sleep problems, which the doctor does attribute to the surgery. She said that some adult patients report some problems like depression, sleep problems, etc. so we will give it some time before we look into other possibilities. There is a small shift in his sternum, but again, not unexpected. His chest is wired together and it is difficult to realign it exactly. She said that she has seen much more dramatic shifts. She did say that we have to keep Justin clear of sickness for another 2 1/2 weeks because we are entering cold and flu season. That will bring us up to the 6 weeks post-surgery about which we were warned in the beginning. We have been cleared for another 6 weeks to return to the cardiologist, and then we will determine if another echo is required. Now we are looking forward to our return to genetics (10/30) the DS clinic (11/3) an catching up with our pediatrician (he is WAY behind in well-baby check-ups because of the delay with surgery). The brief reprieve in doctor visits has ended!

Other than that, we are good. Our freezer returned home last night so that makes the last thing to get our home back to normal. I apologize to those who were looking forward to pictures of the freezer move, but it was after dark and I (the photographer) was on child/baby duty. But the operation was flawless and the freezer is none the worse for wear after its displacement. Now I can assess the loss and plan for another MEAT DAY! (Coming soon!!!)

Apartment Life

So we are settled into apartment life. It's actually not too bad! Randy did laundry this morning...pretty cool, huh? All I had to do was sort and bag and go get my nails done and when I returned, it was all folded on the couch. I could get used to this! I know it won't always be like this, so I am enjoying the vacation. There is no lawn to mow, very little to keep clean, and we only deal with one meal at a time. I am SO glad that Travis loves sandwiches! He'll eat just about anything between two pieces of bread.


I remember now why we bought a house though. I am not keen on people stomping on the floor above our heads (at 3 am!) or people partying poolside at all hours. But really, having a place to call our own, if only for a short time, is fabulous! Here's some pictures from our Saturday. It was good, watching football (A& M won! Whoop!) and playing with Travis:

We visit our house every few days or so. As we approach, we slow down, lower the window, turn off the radio and listen. If we hear our neighbor's generator, our shoulders droop and we resign ourselves to another day without power. Our neighbor used to work for the power company and he even called one of his friends and pled our case to try to get us moved up on the list. I am not sure if it worked, but it was a sweet effort! We drop things off at our house and pick up new things. It's funny: We need different things at different places we've stayed, so we collect things as we need them. At first Justin was only getting sponge baths, so we didn't need his bath. Then at our friend's, she had a baby bath so we were fine, now we are without again so we had to improvise the first night (note the large sponge we found at the apartment!)

Now at the apartment there are only chairs for three people to sit at the table, so we went home and collected some folding chairs. We are quite the funny group as we move from place to place. It is hysterical for me to consider, but it works!

People have asked if I notice anything different about Justin. His stamina has improved and he can cry a whole lot louder! He is able to get deeper breaths so he can carry his cries to a whole new level. And he can eat without taking breaks, so he eats more and longer. Maybe not both good things, but I will deal with the one to get the other! Every day that passes Justin is getting stronger. He can't lay on his stomach yet, but his stomach muscles are remembering how to kick his legs to reach the toys on his bouncie seat, and he is moving around more to touch things. He is smiling and interacting like he was before surgery. That's not a long time for him to get back to where he was, and now we can move forward from here.

I have been thinking about what we went through at TCH. I am a very introverted person. I have my friends and my groups to which I belong, but beyond that I kind of tend to live in a bit of a bubble. I do the things I need to do, but I feel like I live wearing blinders. I have always marveled at Christians who are able to talk with anyone and develop relationships. I never really thought I could do that. Going through this with Justin has made me so full of joy and praise that I cannot help but talk about what God has done for us. I am learning how to live with direction and with focus. I want everyone to know what God can do for them. I am fully convinced that I could not be the mother, the wife, or the person I was created to be without Jesus and his sacrifice for me. I am growing and changing, and it is not learned, it is learning. It's not like knowing that 2 + 2 = 4. It's a constant process, and there are setbacks, and there are periods where not too much happens. On my side that is. Now that I am looking for where God works, I see him EVERY DAY. Pretty cool, huh?

It was actually a treat not to have a lot of responsibilities being at the hospital, so I was able to walk and talk with various people and hear their stories. It was good just to listen and empathize because we were all in similar situations. Some clearly more serious, but we all knew what we had gone or are going through. I could walk down the hall in CVICU and see which babies have DS because of the way their legs flop open like Justin's (there were a lot because DS causes heart defects). And I was able to share how my relationship with God helped our family and continues to help our recovery. Today when we got our nails done, my mom was telling her pedicurist about Justin's surgery and she remarked about sad it was that Justin had to go through that. It struck me because I had never thought that it was sad. After getting Justin's diagnosis and crying a couple of days (straight!) I just jumped into God's arms and let him carry me for a while. It's something that we will face with God. It's sad that Justin had to have surgery, but how fabulous that he is recovering and doing even better. It's sad, but in a glorious way. I NEVER would have chosen this for my child, but it is so clear how God is present in every step of the way.

Some of Justin's friends bought him a Build-A-Bear and the person who helped them stuff the bear asked who it was for and when our friend told her about Justin she teared up a bit. Justin's friends recorded a phrase of Jesus Loves Me on a recorder to go in the bear's hand. Little TD has been wanting to get a card that sings Jesus Loves Me and he was able to sing it himself (with Princess TD). That employee won't forget about making that bear in amongst all that she made that day. That is so perfect. How great to be a witness. God is breaking me out of my shell, and I hope that I never lose sight of the person he wants me to be.

Recovery: Day 9: Home! Sort of...

We were released from the hospital at about 1:30 pm. We got our post-op instructions: Justin is not allowed to go swimming for 6 weeks, jump rope for 8 weeks, or carry a backpack for 12 weeks. I hope I remember! We had our prescriptions filled, we made a withdrawal from the milk bank, and we were on our way! We said good-bye to good old 1528, and to our favorite nurse, Tamara. She was our nurse both times, the false start and the real thing when we arrived on 15 and when we left. We did tell her that we hope never to see her again, except maybe at the grocery store!

Where to, that was the question. We checked out the medical apartments, and they don't have any power, so we headed to my sister's apartment. Justin was just happy to be somewhere other than where he would be poked and prodded. And he was happy to play with his brother. Plus he liked having his right thumb back after they took out the last IV.

We had to take a bath to get all of the sticky off, which wasn't much fun, but it tired him out enough that he went right to sleep. So Justin is in the pack and play, Randy and I have Mireille's bed, Travis has the big chair with the ottoman at the end, Nana has the couch, and Mireille is on an air mattress in the living room. That leaves just enough room for everyone to get to the bathroom at night. I hope this isn't TOO long term, but we heard from a neighbor that the estimate for our neighborhood is sometime after Monday to get power.

Here is an after picture of Justin. The incision looks really good. The 2 drainage tube holes have stitches, so they still stick out. (Travis said that Justin has spiders on his stomach!) and there are 2 smaller spots above the drainage holes; one was the pacing wires and the other was the LA line directly into his heart. He is looking so good; it's hard to believe that it has only been 9 days since surgery.

There are a lot of sick children left on 15, including several heart transplants. Please keep them in your prayers as they have a long road ahead. There will be lots of problems as children are ready to be released, but have nowhere to go. Or need nursing care, but the nurses have no gas. Or have medicines requiring refrigeration, and no power to cool. God protected us through the storm, but for many children at TCH, their storm has only begun. We are one of the "lucky" ones. We are one of the blessed ones.

Recovery: Day 9 (AM)

We were awakened at 5:45 am for a chest x-ray (go-getters, aren't they?), but fortunately we were able to go back to sleep. The results came back very well, so all is still on track for an early dismissal today. The blood work was still not in the right range, but it was headed the right direction, so they will just repeat the labs at our post-op cardiologist apt. Now we are waiting for all the paperwork. That always takes the longest, doesn't it?

We are now working on transportation and of course, where to go. Things at our place are still powerless, but we got word that one of our church's medical apartments close by is available, so Randy is off to check it out. Six of us at my sister's one-bedroom place might turn ugly quick!

The doctor just came in and said we should be out of here in an hour or so! She just needed a good contact number...not sure what to say to that...

Recovery: Day 8 (Evening)

Most of the rest of the day I spent alone with Justin since Randy went to try to save our freezer from certain death. (Remember the post about my "burgeoning" freezer??) We were fine since we are kind of just biding our time to make certain that there are no complications from the chest tube. Travis came to visit again, which was great. There is a playroom on the floor that is open for certain hours during the day, and outside the room there are little cars and vehicles (all foot powered) with which the kids can play. It's really more for the patients, but we let Travis play with one for a short time. Now that will be the thing he remembers about Justin's time in the hospital.

Really, the day was peaceful. Things are starting to get back to normal, so several of our friends were discharged today, including Megan, a little girl born 3 days after Justin who had surgery the same day. We are happy for them and are anxious to follow them home tomorrow.

Of course, home is relative right now. Our home is on a weird power grid that only has about 12 houses on it (really!) and we lose power a lot. Plus, we heard that there are 3 poles down behind our house, so they have to be re"planted" before we can get power. So, if nothing changes, we will be heading to my sister's apartment when we leave tomorrow. With the gas situation (waiting in lines for more than 3 hours to fill up, etc.) we cannot risk being too far from TCH if there is a problem with Justin. We also have to return to the cardiologist soon for a check up and stitch removal. So, if I thought it would be difficult to stay home to avoid getting sick before, this is going to be even better! And the doctor said that until we are sure that the water is okay, I need to boil it for Justin's baths. Fortunately, they will only be sponge baths for a while.

Oh, and the freezer? It was moved to a friend's house (who has power) for the time being. I am not sure how they managed it, but I am sure happy that they did. And from what I hear, the breast milk was saved! But the ice cream was lost, so my mom and Randy drank the half gallon of Cookies and Cream we had just bought!

I have had several offers of places to stay and I might be making the rounds, so now you might wish that you weren't on the list of people who offered to help! One friend who lost 4 trees in her front yard (one hit their car!) said we could stay, but we had to take a tree when we left!