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.