Travis

I am getting into this blogging thing and I thought that Travis deserved a post all about him, since so much is about Justin these days. I was chastised today for having pictures taken of Justin, and not Travis. So I will have to get on that too. But until then, here's some fun facts about Travis:

He is in his jumping phase. He jumps from one place to another just about as often as he walks (or runs). And anything he can jump off is very cool too. He has a stool that he uses for everything (sitting at the coffee table to watch TV, standing to climb onto his rocking horse, etc.) and it is a frequent launching spot.

He is into tools and fixing things. His tool bench is one of his very favorite toys and he "pounds loud" often during the day. He says, "Justin awake, pound loud!" Translation: When Justin is awake I can pound loud! And he does. Here's Travis fixing his grocery cart:

(Notice the use of the stool in fixing his grocery cart!)

Travis enjoys his spray bottle. He likes "cleaning" (wetting things with the water bottle and leaving it for me to dry.) This is how he cleaned the dumpster. He just got a new bottle because his old one broke, and it only took a few hours for him to get a time out because he sprayed where he wasn't supposed to. Here is what he looks like in time out. We didn't tell him that he has to stand on his tip toes, but he does it every time!

He does so well with time outs now, we'll see how long it lasts! He now puts his toys in time out, and I got a time out for not getting to the car quickly enough after church this past Sunday.

Travis LOVES being outside. He lives for Saturday when he can help Daddy mow the lawn, but he doesn't like the trimmer and the blower; they're "too loud". He goes in and out when Randy does the loud things. Today he spent most of the day outside, and when I sent him in to take a bath he was FILTHY. He started sniffling and tried to go back outside, and said that he would take a bath later.

His favorite songs are "Jericho" and "Zaccheus". And we sing them LOTS during the day, and they are on repeat in the car. He can sing them very well too. I love that he sings church songs. He sings the alphabet song and he knows the letters "D" for Daddy, "M" for Mommy, "T" for Travis, and "J" for Justin. Now we need friends with names that begin with every other letter of the alphabet and we'd be golden!

He is "Two, not three." Not sure how that started.

Every day is his birthday, so he can get cake. He doesn't get cake every day, but somehow he thinks that if he says he gets cake, he will.

He uses the little vacuum cleaner to clean up the kitty litter in the bathroom. It's his regular job every day when I am getting ready in the morning. He does really well, and then he likes to dump it out in he trash.

McDonald's is "Uncle Donald's House" and Jason's Deli is "Uncle Jason's". And when we go to the doctor he says we are going to the doctor's "house". We are working on the difference between an "office" and a "house".

He is a GREAT big brother. He always wants to sit by, talk to, and play with Justin.

And here's a few pictures of what Travis has been up to lately:

Dressed to play in the snow in Wisconsin

Cleaning the brick wall of our house while we were washing car

Travis will eat strawberries if he can cut then with his own knife

Taking his turn doing "Tummy Time"

Cooking with Nana

Deck Demo- Day 1

So we started the weekend of deck demo today actually. Our friend came to town and he wanted to attack it himself for a day before Randy was able to help him. He made friends with the neighbor and borrowed a reciprocating saw and made quick work of the hot tub. It is now some assembly required. Then we got the dumpster delivered! We had a 12 hour delivery window (7 am -7 pm) and it arrived at 9 am this morning. It was awesome! The driver was amazing and he put it down right on the squares of plywood we laid on the driveway. Very impressive! It has a HUGE door on the back that we opened and we are now able to walk in and load it very easily. I highly recommend getting a dumpster for any of your trash disposal needs!

So Travis helped with the deck demo by cooling us down with his spray bottle:

This actually is a very important task you see. And Travis really was a great worker (when he wanted to be of course!) He cleaned the dumpster and mowed it a little, and he even loaded a few rocks. And for some reason he thinks our dumpster should be red so he told us several times during the day that the dumpster was NOT red, but green. Thanks, Travis!

The best part of the day is what used to be here:

Is now here:

SO COOL!

That was not fun work, but so great! And look at how much room we have to fill up yet! We were only supposed to fill it 1/2 to 2/3 full, but we showed the hauler what we had to put in and he said that he could probably lift it no problem and to go ahead and fill'er up. Thank you, we will! Randy was very impressed with our progress so he went ahead and ordered 5 yards of dirt to spread and fill in the yard before we sod. Playing in dirt...Travis is going to LOVE it!

Oh, and the raccoons must have moved on because they were nowhere to be seen today. We didn't have to take anyone for rabies shots. It was a bit disappointing not to see them one last time...oh, who I am kidding? PARTY!! THE COONS ARE GONE!

The Down Syndrome Clinic

We have an appointment at the Down Syndrome Clinic. Not until NOVEMBER, but at least it's something. We have heard the wait is sometimes a year. The clinic has several therapists and doctors and they do a complete evaluation and recommend a course of treatment. Then we will return every year or so to follow our progress and reevaluate. The appointment lasts several hours (what appointment at TCH doesn't?) and should give us some good feedback. We have heard from several parents that this clinic is a MUST so we are glad to get an appointment. They also have social workers to help us with all of the government programs and lists that we should check out and add our names to the waiting lists. Some of the waits are very long, including the ones for group homes, so we need to get started NOW so that we are not left without when we really are needing. It's so inconceivable that we need to plan for the time when Justin will want to leave home. He's still my baby!

Reading Lists

Of course one of the first things we did when we got Justin's diagnosis was look for some information about DS. At the genetics center they gave us a book about babies with DS (appropriately titled Babies with DS). That gave an excellent overview of everything to know and what to do at the beginning. I call it the scary book because it gives all the increased odds for the various health issues Justin could have or develop, plus our increased risk of having another child with DS. I could only read a little bit at a time. I have since read another 5 or so books, plus portions of others as they apply to us right now. There is an awesome publisher called Woodbine House that offers books on lots of different disabilities, including DS. The DS books range from Early Communications Skills for Children with DS, to Nutrition for Children with DS, Mental Wellness for Adults with DS, and DVDs showing the various authors of the books. I am amazed at the myriad of resources that are available. Of course most of the books read like textbooks, because they are for teachers and professionals as well as for parents. I want to read all the books, but of course the cost is way out there, so we are getting them a few at a time, mostly as they apply to us. I found another mom who lent me a few of the books as well, and I just finished one of the not-so-textbookish ones yesterday.

It was written by a mom of a DS son, who is now an adult. It includes about 50 essays that she had written at various times in his development. The topics are so poignant and touching. It feels as though she looked in my head and wrote exactly what I am thinking and addressed each thought I have had. It is a scary in a way because it affirms that what I am thinking is real and that the issues are not invented. We will have to consider so many things that we never thought or imagined. She is not a Christian, so that is one aspect that is not in her writing. These are some of the issues that the essays address and questions that I have considered:

1. How will Justin make friends? Will he have typical friends, or only friends with special needs?


2. Will Justin learn how to read? Write? Ride a bicycle?


3. What will I do if someone calls Justin retarded? He is after all...


4. How mentally retarded (I HATE that label!) will he be? Will he be able to recognize other people? Friends?


5. Is it fair to think that Travis will care for Justin when we are unable or when we are gone?


6. Will Travis' wife love Justin?


7. Will Travis' kids wish they had more cousins? Justin will not be able to bear children.


8. Will we have enough money to provide for Justin when we are gone?


9. How do we teach Justin? Will I have the ability to teach him? DS children are supposed to be able to learn forever, until they aren't challenged anymore. I have to keep teaching him always.


10. Will the government programs be available to care for Justin when he is older? Everything is in place for children, when they are young and cute, but once they max out of the schools, there are way more people than programs and the lists are long, often 10-20 years.


11. How can I protect him from sexual abuse? I have this concern for way beyond what I do for Travis.


12. Mainstreaming or special school? Do we spend the money when he is young, or save it for later when the programs aren't as available?


13. How will Travis feel once he understands that Justin is different? Will he resent him? Be mad at us?


14. I have always been an overachiever (some call it anal!) and how will I accept/nurture my average (hopefully!) son?


15. How do I balance caring for Justin and caring for Travis? Travis already asks when we get in the car if we are going to the doctor.


16. How do I "discipline" Justin when he is an adult? He may have the body of a 25 year old, but he may act like a 10 year old. Is it right to treat him like a 10 year old?


17. Will there be a time that life is "normal" again? Will there be a time that we will be a happy family that goes to the park and takes family vacations again?


18. What will people think about Justin?


19. Will there be a time that I am happy Justin was born with DS or will there always be a part of me that wishes he was typical?
    

These are just a FEW of the questions that fill my head. Some sound incredibly harsh, others bring deep sobs. Some are passing thoughts and some cause hours and even days of contemplation. How can I not think of these things though? They are incredibly real, even if I don't want to admit it. I had a talk with someone this weekend and she mentioned that it seemed as though I am living in a spirit of fear and making decisions based on my fear. That shocked me a bit, but it also rang true. That is so NOT how I want to be! I want to bring each of these fears (that really is what all of these questions are) to God and ask that HE take care of them for me, and that he only give me the concern for the things that he wants me to face that day. I know that Justin is more than I can handle (even Travis is!) but I know that God continues to provide the resources in friends, family, doctors, Randy, and in Him for us to be able to handle whatever the day brings. That eases the tension in my shoulders if only for a bit. And I continue to read the books and take in the information and thank God that the information is there. And to ask that he help me for that day. Not for tomorrow, or next week, or next year. Some days are better than others, but I don't think that is different than what any parent faces. I am trying, as best as I am able, to let go of these fears and draw on God's strength. I can't, but God can.

And if you are interested, there actually are some good books from Woodbine House. There are personal stories and children's books that are excellent and if nothing else, they are something different to read.

Yes, they're still here...

We saw the raccoons again Tuesday morning. I CANNOT believe that after the weekend of jackhammering they did not move out. I would think they would not get any sleep during the day and that would make them look for new housing. Apparently not. Then it rained on Thursday and on Friday night we were outside grilling some burgers and we saw this:

RACCOON TRACKS!

The little stinkers! I feel like this is an all out war, and we are losing the battles, but I know in the end we will have victory.

I am getting very excited! We are having a dumpster delivered this week. Now that surgery has been postponed, we can get excited about the deck project. And of course my planning mode can kick in. It didn't take Randy near as long to mow the grass today with the backyard being in such disarray. Half is dirt and the other half is full of rock fragments. Randy cleaned out the gutters and he said that he even found rocks up there! He also worked more on demo today. He said that he heard some shuffling under the deck, but he didn't see any eyes peaking out at him, and nothing bit him. He did promise me that if he did get bitten he would tell me immediately so that I could take him to get a rabies shot. It is looking so great, but it just makes us more aware of how HUGE this project is! Here are some more pictures from the progress today. We added another pile to the picture array. Randy has started dismantling the deck, so now we have wood in the garage. Randy's car has been relegated to the driveway for the time being.

Comments

I haven't been really outspoken about Justin having DS. People will comment about how cute Justin is and I just agree and say thank you. I don't mention the DS. I figure there will be a time that it is very clear and I want to enjoy these comments while I can. When we were at the audiologist I got into a conversation with another mother. She asked if Justin was okay. She asked because we were at an office with several different pediatric specialists, including therapists, and a child would most likely have some kind of problem to be at this office. I didn't know how to respond. I had to think a minute. Her child was called back shortly after that so I just said that we had an appointment for his hearing. But that made me think even more. Is Justin okay? I would say that he's just fine. He may be slower than other children, but he really is okay. It wasn't what I planned for my child, but it's what God planned and I trust that there is a purpose to that plan. I want to learn everything that God has to teach me in this, and never become dependent on my own ability.

Some people have said that I look really good (which I think is code for "You don't look as tired as I thought you would!") and that they are impressed with how well I appear to be handling everything. I would like to think that God is the cause. I am not superwoman! Far from it! I have more than a few moments of weakness, but the strength I have comes totally from God. I asked Randy last week if he thought I was more mature than when we got married and the way he looked at me you would have thought I asked him if I looked fat! He finally did say that yes, definitely, I am more mature. I then asked why he married me if I was immature, and he said because he was immature too. I guess that worked out well for both of us! The maturity has come from so many things that we have encountered in our marriage, preparing us for Justin. All those things have been carefully and purposefully planned by God. Our responses have been both right and wrong, but each has taught us something. I am wiser, but not because of me, but because of my teacher, my God. Don't look at me, look at God. I want people to see God in me. I want to reflect God in all that I do and all that I am. I fail miserably sometimes (just listen to my phone calls with the insurance company!) Don't be impressed with me, be impressed with God. And I have far to go, but God has promised that he won't give up until he has completed the good work that he has begun in me. That is the hope that I have. That's how I can make it through each day. God will not leave me, and he won't leave Justin. What a fantastic promise!

Oh, and one more story: I had Justin's 3 month picture taken and I told the photographer right off that Justin is a little "floppy". I didn't mention DS. He blew me off and said that he had taken pictures of even younger kids. The poor man tried SO hard to get a smile out of Justin, with little success. Half way through he did say, "Wow, you were right, he IS really floppy!" I had to laugh! We'll be back, so he'll figure it out before too long!

Bumped

We got bumped. Justin's surgery that is. We are now on for August 21. Some very sick children are waiting in the hospital for our surgeon to return from vacation, and since Justin is so healthy, we were pushed off until later. Something may come up before that, but if not, we will go the date in August. Kind of disappointing, but we continue to lean on God for strength. Hey, and this means we can participate in the deck demolition!

The Chunk

What was here:

Is now here:

And Randy survived without any major injuries. I am pleased to declare Randy as the winner of this round! Now there is just the task of getting rid of the rock...

A Prayerful Weekend

This past weekend was a very big and emotional weekend as we prepared for surgery.

We really wanted to have some friends get together to pray for Justin's surgery, but we didn't really know how to do it. We ended up having a Prayer Dinner, we called it. We had a dinner and prayer time with some of our good friends and church family. We ate dinner and then gathered in a circle and sang some songs, read some scripture, and prayed for Justin and our family. I cried because it moved me knowing how earnest each prayer was and knowing that God listens to the prayers of an earnest and righteous man. I also cried because I wanted to cry out, "God, I am so scared, but I believe in you and trust your plan! Help my unbelief!"

We thought about having someone watch the children so we could pray without the distraction, but I really wanted them to be included (as much as possible given the oldest children were only 6, and most were 2 and under!) Jesus wanted the children to come to him, and with the dinner being for a baby, I thought it would be good for them to see. We knew it would be limiting, but God knows our hearts, and he can fill in when we fall short. We are the best example and teacher for our children, and this was a great opportunity. One of the children even prayed for Justin!

It was so uplifting and touching to have so many of our friends gathered together for the purpose of praising God and lifting Justin in prayer. I don't know how anyone can face something like this without a church family. Every one of the people present means so much to us and we know how much they love Justin. Here are a few pictures of the prayer time:

Then on Sunday we went forward and asked for prayers of the entire congregation. Many people came forward and prayed over Justin and told us they were praying for him all the time. That was very uplifting and touching. Then in the evening the elders from our church came over and prayed over Justin in our home. Justin was not very happy and he screamed most of the prayer (he was HUNGRY!) I can feel the love that the elders and the rest of our church family has for us and I hope they all know that we love them so much too.

The weekend was hard because I know that the surgery is that much closer, but it was good because we are truly confident that we are COVERED in prayer. We can be confident that God hears us and that he is holding Justin close in his hand. We even sang, "He's got little baby Justin in his hand, he's got the whole world in his hand!"

This Week

This was the last week we are going to be running around until after the surgery. We are wanting to stay close to home so we don't get sick and are forced to postpone the surgery. Travis spent several days with different friends and was a real trooper, but I think it is getting to him a bit. He has wanted mommy and daddy a lot more than usual. Randy has been working outside and that has kept him occupied on the weekends. Travis has always been quite a mama's boy, but I think he is maybe entering a daddy's boy phase. That has potential for me! I might get to sleep in on the weekends! We have had some success in getting Travis to sleep in later in the mornings. He used to cry and bounce up and down on his knees in bed until we would go upstairs and get him, often before 5:30 am. We decided to empower him and let him decide for himself when to get up. The only rules are the sun has to be up and he has to be happy (not crying), then he can come see mama (get out of bed and come downstairs). So now we are awakened to the sound of Travis yelling at the top of the stairs," Mama! Sun outside! Wake up happy! Come see mama!" I'm okay with that because it usually isn't before 6:15 am. Much better!!

I had a conversation with another mother of a DS child from TN. Her son is 3 now. I think it was the perfect age gap between our children: enough that it's not so difficult to remember the beginning, and still somewhat fresh and unknown. The books say that about age 2 or so that they can better estimate the abilities of DS children, but it varies still. We talked some about the practical, informational type things, but the thing I most took away from the conversation was more about the feelings. I have been a little nervous to say some things about what I have been feeling about Justin having DS. I remember very vividly the geneticist asking at the end of our first appointment, "What if he does have DS?" I thought, "What do you mean? He doesn't! We are just here for the test to show that everything is fine and then we don't have to worry about it anymore." But of course we said something about we'll deal with that when it happens, we'll be fine, etc. She said that the first 2 days were very rough. I can agree with that. I woke up the first day after getting the call and not being able to open my eyes very wide, they were so swollen from crying. She was able to say some of the thing that I had been feeling and she left me very encouraged. It's no just the "Oh, everything will be fine," but the deeply gut wrenching truth of, "It's not easy, but God will give you the strength for each day." She said that someone told her that she was happy that her child was born with DS. She said that she couldn't say that yet. She still feels like she wishes that sticky extra 21st chromosome wasn't so sticky. Will there be a time that I am grateful Justin was born with DS? Maybe. Right now I cannot imagine him any other way. She was the second person to mention that while we cannot guarantee it, it feels like God will take these sweet children and adults into heaven with open arms. Maybe it's true, maybe not, but I know that God has a plan for Justin and whatever it is, I will do what I can to teach Justin about God and leave the heart issue up to Him.

More Backyard Work

So Randy got the small jackhammer and went to town on the rest of the rock waterfall. It did great until he came upon a HUGE chunk of concrete that was the base of the entire structure. A couple of friends came to help and even with the extra help there was no hope for that big chunk. So today Randy went back and got the big guns: the 65 pound jackhammer. He is attacking it right now. We'll see what becomes of them, Randy and the concrete...

Oh, and we saw the raccoons again. We hadn't seen them all week and then last night after the major renovations on their home the came out to see what we had done. We had hoped they were spending the week looking for a new home, but it wasn't to be.

Back to the Cardiologist

We were back at the cardiologist yesterday for our last pre-op appointment before the big day. We went through all the tests: echo, EKG, and chest x-ray and all looks still good. No need for medicine and he is growing well. The doctor is still pleased, which makes me pleased. Of course all of this took over 4 hours and just the waiting and stress makes me feel like I have gone through a wringer. Fortunately, the person with whom I left Travis graciously invited Travis and me to stay for dinner, plus she sent home a plate for Randy! I really needed that. She really was amazing. It's difficult to say to someone, "Here's my child and I hope to be back before he has to go to bed!" I really have no clue how long anything will take and traffic always adds a twist too. There are so many health issues that are treated at TCH, and in the echo waiting room there were 2 cousins waiting for another cousin to have her heart checked after finishing chemo treatments. The little girl being tested was only 14 months old and she was already finishing chemo. That family has gone through so much too. I consider myself pretty blessed that once this surgery is over, we really will be in the clear for a while, I hope. Justin does have a greater chance of having leukemia and some other illnesses, but for now I just want to take the time to enjoy my 2 boys. I can see already that Justin is taking to Travis. He looks at him and follows him with his eyes across the room, and when Travis sits next to us on the couch while I am feeding Justin, he tilts his head back to see that he is there. It is great to see my 2 boys bonding already!

Travis was being a good big brother yesterday morning. He shared one of his baby dolls with Justin so I had to take a picture:

The Backyard Project- Part 2

This is all we have removed so far, not counting what we have hidden in trash bags for the garbage men!

Randy wasn't convinced that I portrayed the results of his weekend's work adequately, so he took more pictures and I am posting them to show off for him. He really did a lot of work, but still, there is LOTS left. Please come and take out your frustrations. I have whacked away a bit and it really is rewarding. I haven't seen the critters back since Saturday, but I haven't been up in the morning when they usually return. And believe me, that is a very good thing!

The Backyard Project

The backyard project has begun. Randy decided that it was too much for the group (whoever comes) to do in one weekend and he didn't want them to have all the fun so he has been chipping away at the waterfall. You can't really tell. Well, that's not entirely true. There is a huge pile of rocks which our neighbor has been taking a few at a time to build a little wall around her flower beds. The waterfall does look a bit smaller, but there is still a lot to go. So please don't feel like you have been jipped because Randy started without you. It has been a whole family affair. Randy's dad has helped, and so have Travis and I. Travis likes the dirt that we uncovered behind the back wall. He helped scoop the dirt out and...okay, he really just played in the dirt!

We have a picture of the before. I didn't take a picture of the back because I didn't know that the most progress would be visible from the back, but I suspect you can imagine what it looked like before.

And this is the now, after this weekend of work:

I think we have decided to rent a jackhammer for next weekend. I hope that finishes off the waterfall part at least. I thought (okay, hoped!) we might have scared away our friends, but I saw them come out last night after dark. I didn't see them come back this morning, but I have great faith that they are still there. I told you, they are smart little guys! We did pry off some boards to try some more Critter Ridder; we'll see if it works...

Faux Pas

I had the carpets cleaned today. Mostly because I spilled almost an entire bottle of Justin's vitamins on the floor in the bathroom. Why can they make cough medicine and benadryl in clear colors so they don't stain, but not vitamins? I don't think anything made for children under 5 should have any color at all. Just my opinion. Okay, so carpet cleaning today. I also had the tile and grout cleaned in the kitchen. It was really dirty and I didn't want to do it myself, so we had it done. My time is very valuable...just ask Randy. I am expensive! So, everything was cleaned except for the bathroom upstairs (Which we had cleaned because someone who used to live with us MAY have gotten some of her make-up on the floor. I know it got pretty crazy up there some times!) So I decided to check out the tile cleaning. There were a few spots that needed some touch ups and I was cleaning them with a toothbrush when the man came out of the bathroom upstairs and said, "Hey, I just cleaned that!" "Yeah, well, there were a few spots, I just thought I would get them while I saw them, uh, um..." Not so good. So I told Randy this later and he says, "Oh, did you just tell him that you are anal?" What? Me??!! I think we have a little pot and kettle thing going on here! Anyway, I felt terrible and I think I made the man feel better, but the moral of the story is, what until he's GONE before you redo his work!


I took a picture of Travis in the middle of our empty living room the last time I had the carpets cleaned, so I felt it was only fair to do the same with Justin. So, here he is:

Audiologist-Part 2

So we were back for the ABR test this morning. We prepared by waking at 5:30 this morning and fighting sleep for the next 3 hours. At first, Justin would not sleep and I was really bummed because I did not want to do this again, but he ended up sleeping enough to get the data they needed. And the answer is...PERFECTLY NORMAL!

That's what she said. She was very pleased and said that she started with sound levels at normal conversation range and went down to a whisper and the right signals were getting to his brain and registering just fine. There is some fluid in his right ear, which is not uncommon or unexpected, since he lays down most of the time. But it is not affecting his hearing, so he will be right on track for speech and language development, as far as it is affected by hearing. She was very helpful and said that any time we are concerned about fluid we can go back for the test that was done last week (much easier than the test today!) and we can see if fluid is a problem. She is going to speak with the ENT and determine when we need to go back to either or both of them. But we are free at least until he's 6 months, unless we notice a problem.

On the way home we stopped at the lab and on the FIRST stick, she got blood. I told he she would and she sort of chuckled and said that it wasn't very likely. I told her that I had been praying for it, and Justin really needed it to be the first time. So that is one more pre-op thing off our list.

I took advantage of not having Travis (he spent the night at Me-Me and Pop's again-they agreed to keep him again!) and I stopped at Academy to do some shopping. One of the things that Randy asked after Justin was born was if I was going to buy some new undergarments. Apparently he's not a big fan of the stretched-out look. My awesome friends helped with a gift certificate to Victoria's Secret, but I also needed more work out clothes (again, according to Randy). I had a bit of trouble finding clothes that fit the rules that Randy and I have established:

1. The clothing may not be wider than it is long. This applies to both tops and bottoms.
2. If it hangs over, cover it up. (You can figure this one out.)

The shorts were pretty short, and if I am going to be working out at the gym, I do not need to be giving anyone a free show! You would be pleased to know that I was successful, and when the surgery and recovery is over I can return to the gym in well-fitting, decent shorts. (Randy has been threatening to add to my comments, so maybe this will be enough to pique his interest.)

Generally

So generally speaking, how are we doing? Really, quite well I would say. Justin has been gaining weight very well. He has passed the 10 pound mark and is getting a little roll of fat on his legs. I wouldn't call it "sausage legs" yet, but maybe "little smokie legs". We are doing the same things that most families do during the summer: We have gone swimming (Justin fell asleep in the water), we have gone to the park, and we "help" Daddy mow the lawn, until it gets "too loud" for Travis. Justin has really started talking and yesterday we had several long conversations. This morning he woke up with quite a lot to say as well. He is smiling some too, but that takes quite some effort on my part, and he WILL NOT smile for the camera! I have about 20 pictures of a vacant stare from our photo session yesterday.



I started thinking about leaving Justin in the church nursery and what I would say to the nursery workers. I can truly say that the similarities to other children far outweigh the differences. All the books say that, but I still spent the first few weeks looking for them. No one could tell me any differently, and I would never tell anyone else in my place not to do the same. I think it's a time that every parent has to go through. But I really do feel settled in. Of course, after the surgery it will be even better, but for now I am pleased to say that I am confident we will survive. Not just survive, but thrive.

The Coons

So apparently critter ridder does not work as well as we had hoped. I didn't see them yesterday, but this morning I got up just in time to see 2 of the babies head down the hole by the tree stump. And then as I was feeding Justin mommy came home and sat on the stump for a minute and snubbed her nose at me, daring me to try to take away her home. So on to Plan B...not sure what that is yet...

This Morning

This morning I spent $20 and an hour and a half and not one drop of blood did Justin yield. So we have to go to ANOTHER lab to have Justin's blood drawn. This makes 6 different doctors, 15 appointments, 3 blood draws, 3 outpatient diagnostic procedures, several ECI evaluations and therapy sessions, and countless phone calls to insurance companies. And he is 3 months and 6 days old. Whew!

Preparation

Planning for something like Justin's upcoming surgery July 31 brings out the best in me. The organizer in me that is. I fully recognize that I will not think of everything, but anything that I can prepare now is one less thing to do later. I have been writing up a list of Travis' day and the things he can and can't do so he doesn't try to pull one over on his caregiver, whoever it is. He has already learned to go to the other parent if one says no to something! There is a list of the household things that need to be attended to, including how to use the TV/DVD remote controls, where the cat food is, and what days are trash days. I have stocked up on diapers, pantry staples, toilet paper and cleaning supplies. I have charged the camera battery and gotten a computer to use at the hospital. (It's only for a few hours a day, so I won't be able to post until the evenings probably.)

I still have to prepare food for us at the hospital and for whoever is with Travis at the house. I had a very sweet surprise this week when a friend brought down some containers of soup in individual containers labeled and ready to freeze for us to eat at the hospital. Wasn't that awesome?! I have some very fantastic friends and they continue to amaze me.

I also am preparing for the impending demolition and I have ordered 2 palates of sod to replace the deck, found a trailer to haul away the trash, and I have yet to find a place to take it. I also need to get enough drinks to ensure that no one dehydrates. And Randy put some Critter Rid down the hole by the stump to see if we could encourage out friends to move out. Nothing jumped out at him, so now we just have to hope that they don't die under there. My mom said that she had a friend who trapped some raccoons and marked them with spray paint before they dropped them 20 miles away and they found their way back within 2 days! I told you raccoons are smart!

There is the mental preparation as well. I realized that since Justin is so young I don't have to explain anything to him, which is a huge blessing, but I do need to talk with Travis. I am not sure how early to start because as soon as we say something, it means it is supposed to happen immediately in his world. We can't say that we are going to Pop's until we are ready to walk out the door because he will follow us around with his shoes until we go otherwise! He put my shoes on when I wouldn't put his on and he said "Ready to go!"

Preparing myself is a whole other issue. I have seen pictures and talked with other parents, but until I have to give my child to the doctor I don't think I will be ready. Lots of prayers for Justin and our family, and lots of support from friends, that's all I can say. I know that God is the one who will heal him. That is the very best preparation for me. Knowing God and trusting his character and leaning solely on him. He has all the strength, all the wisdom and all the power that I need to get through this. How great is that?!

Audiologist

We went to the audiologist this morning. Justin has not had a successful newborn hearing screening yet. She started with that test and got some response in his left ear, but not his right. She said that because she cannot see his ear drum it is hard to know if it is the ear drum that is reverberating or if it is the ear canal because at his age they are still flexible and can make similar movements. Then she tried another test, but Justin was not very happy (who would be with someone sticking things in your ear!) and it was difficult for the computer to pick up any response from the ear drum. So, we have to go back for another test next week, an ABR(auditory brain stem response). This requires him to be very asleep so I am supposed to have him come in very tired and very hungry so he will eat and then fall into deep sleep. She said that it often takes 2 times to gather enough data. She mentioned that I brought him in at a good age because at 6 months they start sedating babies for the test. I hope to avoid that if possible so we are trying to rush this before surgery. After the recovery from surgery it will be that much closer to 6 months, especially of it is delayed, so the sooner the better for this. The ABR will also determine if the hearing loss is inner ear (permanent) or middle ear (caused by fluid or the narrow canals). Of course you can guess what we would like the results to be, but please pray also that they are able to collect sufficient data the first time. I know that I will be as traumatized as Justin is!

Also, we have to get Justin blood typed for surgery. Randy and I are the same type, which would mean that most likely, so is Justin, but we still have to be certain. And TCH will only allow first degree family to donate blood, which is Randy and me, since Travis is a bit (okay, WAY) too young. And we can only donate one specific day to allow time for testing before surgery. We definitely want to donate, but I really hoped that other people could help too.

Party Time

Last night I was ironing and the cat started going crazy by the french doors that lead onto the deck. I turned on the light and found the raccoons having a little party on the deck. Mom was sitting there and the kids were rolling around and playing. I watched them for several minutes and they didn't seem bothered by my observation. The cat wasn't happy and I don't want to take Travis out there where they were playing! So the deck cannot come down soon enough for my taste!

You are invited to a destroy-the-deck party! Anyone is welcome to take out their aggressions on our deck on August 2-3. Come for a few hours or stay the whole time. Really, please come! Tetanus and rabies shots are not included!

Meet the Surgeon

We met Justin's surgeon today. It was a very good appointment. They did the typical doctor appointment checks, but they also did blood pressure in all his limbs. It has typically been very difficult to get a single blood pressure, but trying to get four I thought would be impossible. I didn't ask why, but I suspect it has to do something with seeing how the pressure is on either side of his body and how the heart is working. Just a guess though. So we survived that and then it was meet the surgeon. We actually got to talk in a little conference room rather than an exam room, which I really enjoyed. He went through his explanation of Justin's defect (complete av canal defect) and how he is going to repair it. The surgery should take about 5-7 hours, depending on how the preparation goes. I guess getting all the lines in is the hardest part. They will put him on a heart/lung bypass machine and stop his heart, which is the scariest part for me. They will give us updates every hour either in person (a nurse) or by phone from the ER. When he comes out of surgery he will be intubated and have a couple of drainage tubes and a couple of wires to monitor the heart. He will be in CICU for about 2-3 days, and a regular room for 3-4 days, which is less than we thought-yeah! The tube should come out the day after the surgery and the tubes and wires after that sometime. We can stay with him in his regular room and they even said Travis can come up too! I am not sure that is the best idea, but at least we know it is an option. Of course he had to mention the possible complications, which only account for 5% of cases. It's just the usual things, infection, bleeding, death... After nearly losing my dad last year, and then only having a .3% chance of Justin being born with DS, those seem like huge odds to me, but I just have to trust all the more. The doctor did mention that of all the children who have this defect, the children with DS usually do better because they have extra tissue for the doctor to use in the repair. Yeah?! So then when Justin goes home he will be on 2 medications, one is a diuretic and one is a blood pressure medicine. That should only be for about a month to allow for healing and then no more. He will have a couple of post-op visits with the surgeon and the cardiologist and then we are free! Only annual visits to ensure that the patches and repairs are still holding. There is a small chance that he may need a second surgery, but not for certain.

All in all, it was a good visit. Randy and I got a lot of our questions answered and the surgeon made us feel very comforted. He did mention that he is headed on vacation between now and then so we can hope he is very well rested before he works on Justin. We are so blessed to live in a place where there is a such a great children's hospital. When we mentioned the extra things that need to be considered for Justin's surgery because of the DS, the doctor said that a large portion of the children they see have DS and they are very familiar with those issues. I really can say that of all the doctors we have seen for both boys and even for ourselves, the people at TX Children's have been the most helpful and the most willing to go out of their way to help us. We are having some insurance problems and our geneticist was going to write a scathing letter to the insurance company until his assistant settled him down. But it's such a relief knowing that they really WANT to help rather than just get by with the minimum.

And a side note: I have been worried about how I was going to clean my house while I was at the hospital. I called a friend to keep Travis during an appointment and she happened to mention that she cleans houses and I burst into tears. I had no idea that she did that! But God put it on my heart to call her, and not one of the many other people who have offered to help with Travis and in the process He supplied another need too. God is SO good and I am constantly amazed at the way he provides in unexpected ways.