So today has been a much better day than yesterday. Travis and Justin both made it through the night without any problems. That made for blissful sleep for Randy and me. And Travis is just fine today, although he wants more of the medicine I gave him to drink yesterday (pedialyte). He thought that was pretty good! Justin is a little cranky and we don't have any results from the miralax, so we're keeping at it. We'll go back to the doctor next week to see how his weight is doing.
We did find out the "score" from Justin's OT reevaluation. There are two areas, grasping and visual motor integration. Grasping he went from 20 mo. to 28 months. There wasn't as much progress in that area because there isn't as much to test. The age range of skills jumps from around 18 months to over 40 months. The next big thing he should be doing is buttoning buttons and he can't do that at all, so that stunts his scoring. But 8 months progress in 1 year is still great! And in visual motor Justin rocked! He went from 22 months to 36 months! That's huge! He is really moving along. The things he is working on now is refining some of the skills he has learned. Like he can draw a line, but now he needs to draw it straight from one point to another. (They even use a certain degree of variation to determine if he meets the criteria!) He can cut, but now he needs to cut straight following a line without help. (This takes major coordination to cut with one hand and feed with the other.) So Miss Caroline is very pleased and is anxious to see how things go from here!
Wednesday, September 28, 2011
Tuesday, September 27, 2011
More
I think I am ready to say enough is enough. Or "I give". Whichever will make the madness stop!
Justin has not been sleeping well, and I was sure it was part of his ploy to get me to hold him because he slept great while I held him. I did not sleep so well. This morning he woke up (around 5 am) and started gagging like he was going to throw up. He didn't, but I noticed that his belly was really hard. He always has trouble with constipation and the pain meds he has taken for his tonsils only made it worse. We have been using our usual methods to help him, but this was beyond, so we opted for more extreme measures. That started things going and Justin dozed in my arms between having to push things out and gag some more. He eventually threw up several times and blew out more diapers than he has since being a newborn. So, we called the doctor.
The doctor was very busy and we waited over an hour past our appointment time to see him. During that hour we watched half of "Finding Nemo" and Justin made some more diapers and napped some more. The doctor checked Justin and didn't find anything, but he did notice that his weight is down nearly 2 pounds in the past 10 days. (Using the same scales we were on when we made his vomit run to the doctor between the 2 surgeries.) That worried him so he sent us for a belly x-ray. While we waited for that Justin blew out 2 more diapers and dirtied his shorts, socks, and my shirt. I had more clothes for Justin, but not me... Yuck!
The x-ray showed lots of stuff needing to come out, but no obstructions or any other problems. So we went home to clean up. Travis was very patient through this whole process even though he was ready to be done after the first doctor. We got home and Travis said he didn't feel well. I gave him juice and a bowl and went to fix some lunch. A light lunch for sure. Justin made another diaper (#7) and while I was changing him Travis yelled that he had thrown up. Red juice all over the white couch. He forgot about the bowl.
I wiped up the couch as best as I could and left lunch right...where...it....was.
Then I collected Travis from where he was...
And Justin from where he was (he was not climbing up onto the chair, this was how he settled down to rest)...
I whipped open our bed and laid all three of us down and we took a nap. The boys were asleep in 2.5 minutes and we slept beautifully for 2.5 hours. In time for Daddy to get home and save us. Or get sick himself, not sure which just yet. Anyone know where we can pick up a good couch cheap?
Monday, September 26, 2011
So Much Better
Justin is doing so much better. Friday dinner was the first meal he ate entirely in his own chair. He still has episodes of clinginess and cries more than usual, but they are less often and not so long. He is starting to recover some of his playfulness and silliness. We were really missing that!
Justin also caught on to the idea that when he doesn't want to do something, he just says that his throat hurts and then he gets snuggles and he doesn't have to do it. This usually involved eating. He has gotten lazy and he likes for us to feed him. So we put his plate down in front of him and he points to his throat and whimpers and then we set him on our laps and feed him. He won't even hold his glass sometimes, the little stinker! It also carries over to brushing his teeth and putting on his clothes. Figure out how that makes your throat hurt!
He went to some therapy last week (not speech) and it turned out it was time for an OT reevaluation. I was a little skeptical that it would go well, but Miss Caroline said she would try and see how he did and wait if it was too much. Well, he did so well that she couldn't finish. Remember, she goes down her list of activities and she gives him either full, partial, or no credit for doing the things she asks. When it's three in a row of no credit (he can't do it at all) then she stops the test. He kept doing so well that he would be able to do one of the tasks and not skip three so she could stop. He has a smattering of skills up to 41-44 months! He's not even 42 months yet! She has to finish the test this week and then score him. She guesses he'll be in the mid to upper 30s by the time she figures it all out. How cool is that??
I am so glad Justin is doing better when he's awake, but the nights have not settled down yet. He is still not sleeping well and waking up very fussy. We go back to the ENT the middle of October and we will see how he's doing by then. He still has the appointment for the sleep study for the CPAP machine, but we might need to go back to the sleep clinic (doctor) for reevaluation now that his tonsils are out. We'll see how he does when he is completely healed. Really soon, I hope!
Justin also caught on to the idea that when he doesn't want to do something, he just says that his throat hurts and then he gets snuggles and he doesn't have to do it. This usually involved eating. He has gotten lazy and he likes for us to feed him. So we put his plate down in front of him and he points to his throat and whimpers and then we set him on our laps and feed him. He won't even hold his glass sometimes, the little stinker! It also carries over to brushing his teeth and putting on his clothes. Figure out how that makes your throat hurt!
He went to some therapy last week (not speech) and it turned out it was time for an OT reevaluation. I was a little skeptical that it would go well, but Miss Caroline said she would try and see how he did and wait if it was too much. Well, he did so well that she couldn't finish. Remember, she goes down her list of activities and she gives him either full, partial, or no credit for doing the things she asks. When it's three in a row of no credit (he can't do it at all) then she stops the test. He kept doing so well that he would be able to do one of the tasks and not skip three so she could stop. He has a smattering of skills up to 41-44 months! He's not even 42 months yet! She has to finish the test this week and then score him. She guesses he'll be in the mid to upper 30s by the time she figures it all out. How cool is that??
I am so glad Justin is doing better when he's awake, but the nights have not settled down yet. He is still not sleeping well and waking up very fussy. We go back to the ENT the middle of October and we will see how he's doing by then. He still has the appointment for the sleep study for the CPAP machine, but we might need to go back to the sleep clinic (doctor) for reevaluation now that his tonsils are out. We'll see how he does when he is completely healed. Really soon, I hope!
Thursday, September 22, 2011
The King of Small Odds
So Justin had about a .3% chance of being born with DS and it happened. He had about a 1-3% chance of having his tonsils open up and bleed when the scabs fell off, and that happened too.
Here's how it all happened...
Sunday night I went into Justin's room around midnight and I noticed something dark on the sheets. Justin also seemed to be breathing sort of watery so I took him into the bathroom to blow his nose and wipe his face. When I looked at the kleenex, it was dark too, so I turned on some lights and saw that it was blood. And then I saw that his face, PJs, lovey (affectionately known as "bee") and hand were covered with blood too. I went to wake up Randy so we could pow-wow and decide what to do. That was easier said than done. It took four "Randy"s of various volume levels and an arm shake to wake him. He held Justin while I searched for the ENT phone list sheet. I found it and made a call to the on-call doctor. She said that in a small percentage of cases when the scabs fall off, around 7-10 days post-op, the tonsils start to bleed. So she said to take him to the ER. Blood was running out of Justin's mouth down Randy's shoulder while I was talking with the doctor, but he was calm at least. I asked if we should come to the hospital where we had surgery or if the closest place was best. She said we should come down to them if we could make it.
So then I had to find someone to come spend the night with Travis. Again. The second time in less than a month. Does everyone go to the ER as often as we do? Is this normal???
Our awesome friends came (same ones as before...they are going to start blocking our number, especially between the hours of midnight and 6 am) and we were off. Justin was fine so we decided to make the trip down to the surgery hospital.
The ER brought the usual tests and a stick down the throat to check his tonsils. Quite unsuccessfully. The ER docs called up to the ENT group and a doctor from there came to try his luck. At this point I started to get mad. Not at the doctors, but at God a little bit. Justin was screaming, crying, looking at me pleading for me to make them stop and I couldn't. I mean, it was what they needed to do to help him, but it's just not right. There are pokes and prods and tests that Justin needs, but this one was not one he needed. This was not something that Justin should have needed to go through and yet, he did. Why couldn't this have been spared? That was my inner discussion/argument with God through this whole ordeal.
Here's the ER. We got there about 2 am so between doctors he fell asleep. Do you like my just jumped out of bed look?
The doctors wanted to know how much Justin bled. That's hard because it was spread out everywhere. And they didn't know how much he had swallowed. If he had swallowed a lot there was a high likelihood of him throwing it up. Several doctors made sure we knew how bad swallowing blood makes the stomach feel and that it might look really bad when it comes back up. I was ready to throw up by the time they were done describing it!
It was determined (by blood test, another needle stick) that he hadn't swallowed very much. (Thank you, tummy sleeper!!!) The bleeding appeared to have slowed so they decided to monitor him and wait for his doctor to come in in the morning. Fortunately, it was her surgery day so she would be there early. They started an IV and began giving him fluids, which was good since he was barely above the dehydration line. We got into a room around 4:30 am and we settled in for a little sleep. Okay, Justin and I slept, Randy watched us and played on the Ipad.
Then during 7:30 rounds they stuck another stick down Justin's throat and found the bleeding had slowed, but still trickling so it was determined that he was in for another surgery to recauterize the spot that was bleeding. The doctor said it was quick and easy and after a couple hours in recovery we would be on our way. We just moved from the room to pre-op where Justin fell back asleep. All the various doctors made their pre-op visits. I asked the nurse if they could put the heart monitor stickers in the same spots as before since I hadn't gotten them cleaned off yet. She offered to clean him up while he was passed out. I enthusiastically agreed! And then for the second time in a week, we handed Justin over for surgery.
We rushed out for some breakfast since the surgery would only take about a half hour. We needed some caffeine! I knew my lap would be called into action and my hands would not be my own for a while so needed some sustenance.
We met with the doctor after surgery and she said that everything went well and this should be it. The chance of recurrence was very slight (yeah, whatever!) She just wanted to keep us for 12-24 hours to make sure he was okay. What! We thought we were out of there!! When we said that everyone had said "easy, out in a couple of hours" she looked shocked and said that she doesn't do it that way. Okay, so we're grateful she's cautious, but bummed that we now have to start planning for what we're going to do with another day in the hospital and our other child who think we abandoned him again!
Recovery went well. Justin found the most comfortable position to be with his chin planted firmly in my chest. Ouch! The things you do for your kids, right?
We got back to our room and enjoyed some TV time. They had changed Justin out of his nasty PJ top, but the gown they found for him was 4 sizes too big, so we had to change him back into his former bloody attire. And by this time Bee had blood, Tylenol, apple juice, and spit up on it. It pained me to give it back to him, but we weren't going to make it otherwise. Randy went and bought me lunch and Justin had some jello. Wouldn't touch the applesauce...
We hung out until around 6 pm and we had seen no doctors so we asked our nurse if there were going to be rounds because we were ready to go. She looked surprised, which led me to believe that she thought we were spending the night. We really wanted to go so we asked if we maybe could see a doctor. We were getting stir crazy in our room so we walked the loop on the floor. Randy was pole master of Justin's IV and I was baby holder. After a scrape on the heel (mine!), Randy got the hang of it and we were cruising. Justin wanted to keep going, but he was getting heavy and he refused to walk. So we sat in a chair in the hall and waited for the doctor.
By this time, Justin was screaming at everyone who came by and even looked his direction. He yelled at the PCAs who took his temp and BP. He yelled at the nurses, and even the poor cleaning people! Of course, he was due for one more stick in the throat before we could leave. The doctor came and did his obligatory throat check, determined we were okay and was ready to let us go, until we mentioned that Justin had not drunk anything all day. A half of a tiny juice box. He was concerned but I said that he wasn't going to drink much during the night so we might as well go home and see if we could do better there. (Where he wasn't yelling at everyone...)
The doctor called our doctor and she agreed so we left the hospital close to 8 pm. Definitely our longest ER visit yet. We took our bloody selves home, cleaned up, watched Monday Night Football, and went to bed.
Justin has done much better since then. He ate 2 hotdogs for lunch on Tuesday and he drank two cups of water. (The threat of a return trip to the hospital might be slightly motivating...) We have definitely turned the corner. The doctor said that it wasn't like starting recovery all over. By the end of the week he should be close to back to himself. I have high hopes, again!
And Travis? Of course he woke up shortly after we left and cried himself into a fit that we abandoned him again. Our friends calmed him down and brought him downstairs and let him lay on the couch. Now it was Ms. Tina and Mr. Rob who came over this time, last time just Ms. Tina. So this time Travis had new audience and after he woke up some he was ready to get up and play. Ms. Tina finally had to say "Mr. Rob, it's bedtime!" Travis slept on the couch and they got the floor!
Such...good...friends!
We are none the worse for wear from our little adventure in the hospital. I think Justin may be scarred though. He usually does so well with all the doctors and he is the best "ahh"er but there was no getting him to let anyone look in his throat. I think it might be permanent. We'll see when we go back for our post-op follow up next month. We did get one good thing out of this trip: a real stethoscope! It was in our room when we left and Randy asked the nurse about it and she said that we could have it. That kind of made things all better with Travis. He had Justin laying on the couch listening to his heart. Then he flipped him over to listen to his breathing. Justin played right along. Maybe that's the trick, let Dr. Travis get him to say "ahh"!
Sunday, September 18, 2011
Tonsils & Adenoids Recovery
One word: Brutal
I honestly thought that Justin would do better than Travis because Justin seems to have a higher pain threshold. But Justin has been worse by 1000 times. I think it's because Justin can't talk and tell us what is going on. We explained that his throat would hurt and that it would hurt to swallow for a while, but that it would get better. He ate a couple of popsicles in the hospital and some jello and applesauce, plus some scratchy foods, so I really thought it would only get better. If he was eating that so quickly post-op, then by the end of the week we would be golden.
Not so much.
He has been screaming at the top of his lungs to the point of near hysteria and no amount of consolation helps. I was up with him most of the first three nights (counting the one in the hospital) and he was exhausted all day long, taking naps nearly every morning and afternoon. But the morning naps were while I held him and the afternoon naps started in his bed and ended with me holding him. He whined every mealtime, even after we knew his throat didn't hurt because he was eating chips. He would whine so much that I have had to hold him during meals and even that doesn't help. I believe we have only gotten the bare minimum of liquids and nutrients in him to avoid the ER because of dehydration.
We went to church Wednesday night because I wanted to go to class and I wanted Travis to get some attention. Justin sat with me in my class and did great! I was answering a question and the next thing I knew, Justin had his hand down my shirt! That was quite the fun game for a while and I thought we might be doing better, but it didn't last.
He started vomiting on Friday and so we had to go to the doctor who said that his scars look great and all she could do for him was give us some anti-nausea medicine and warn us about dehydration. Believe me, he can still crank out some major crocodile tears so we feel like we're still safe. Randy got home Thursday and I was looking forward to some relief, but no. Justin won't go to Randy so the only one who has benefited is Travis because now he has someone to give him some attention.
Justin does feel better between meals, but the minute we bring out food he starts whining and complaining. That's when I really wish he could talk. I have tried smoothies, jello, ice cream, popsicles, juice, water. Nothing is a winner. I keep praying that I could understand what's going on but so far I got nothing. I don't think he's in pain, but I don't know why all the protesting.
It has been a bad mommy week. I am so tired that I am getting as cranky as Justin. I feel bad for him, but I just want my sweet cuddly boy back! Travis took a solid week to get back to himself, so I have high hopes for next week.
Monday, September 12, 2011
Tonsils & Adenoids
Surgery #2: I am so impressed that it took three years before Justin needed more surgery! It did not take long for us to get back into hospital mode. It's a little funny because today has been a mix of flashbacks from both Justin's heart surgery and Travis' tonsillectomy last year. Same surgery as last year, but the same child/hospital stay as 3 years ago. I even got a snuggle/nap with Justin like we did before! But I am getting ahead of myself...
We had to be here early at 6:15 to check in for surgery. We are in the other day surgery area, opposite of the one we were in last year with Travis. It's a little smaller, so we got to know the other families while we were waiting.
Here's some pre-surgery pictures. When we were prepping Justin for surgery, my mom suggested that we find out if Justin would get some special pajamas to wear like Travis did last year. I actually asked the person who called with our surgery time and she said no, so I was a little disappointed. So I had to come up with some other "cool" things that Justin would like about surgery. It really all comes down to ice cream for him. But then he ended up getting PJs so it was cool for him too. The other kids were too young to catch on to the "coolness" factor.
Justin went in a little after 8:15 and he was out by 9 am. He was more restless than Travis and it took longer got him to calm down after medication. He did finally go to sleep after the medicine kicked in. They didn't even offer Justin a popcicle, which was fine because he wouldn't have touched it. He was one whiny baby!
We got to the room around 11 am after a slight delay. Our recovery nurse was very anxious to get rid of us. She called several times to check on the room. It turned out they were replacing the TV and then they had to touch up the paint around it, so they had to wait for it to dry! It turns out I was really glad there was a TV since I didn't get out from under Justin for most of the next 18 hours. It was me and the TV remote!
And a little napping too. Which was good since we only got about 5 hours sleep the night before!
The reasons they wanted to keep Justin overnight was because he is young, he has DS, and the reason for the tonsil removal was sleep apnea. The tonsil removal can cause swelling and that can cause the apnea to increase. So they had an IV hooked up keeping him hydrated and a pulse ox on to monitor the oxygen levels. The afternoon was non-stop alarm madness! Both the IV and the pulse ox were beeping and Randy just stood there to watch the monitors and silence them as necessary. Randy finally had to leave to head to the airport for a conference out of town. So that left me to listen to the alarms since I couldn't reach them (holding Justin and all...) In the evening the nurse finally decided to give him supplemental oxygen through a cannula. By this time, the activity in the room had gotten to Justin and he was nearly beside himself every time the door opened. It took both of us to get the cannula on him. So he had O2, IV, and pulse ox on his nose, arm, and toe. There was no moving him very far!
They turned off the O2 around midnight and while the alarms continued to harangue us, Justin did well enough to get released in the morning. The alarms were even in my dreams during the 2 1/2 hours I slept! Good thing we were up for 6 am rounds! The nurse and I managed to remove the IV and the tape on his face from the cannula, but the heart monitor stickers stayed on. I took quite a bit to get them off of Travis last year too. And the tape residue lasted at least a week. Apparently it's uncomfortable to rub on boys' chests with nail polish remover. Who knew?
We had to be here early at 6:15 to check in for surgery. We are in the other day surgery area, opposite of the one we were in last year with Travis. It's a little smaller, so we got to know the other families while we were waiting.
Here's some pre-surgery pictures. When we were prepping Justin for surgery, my mom suggested that we find out if Justin would get some special pajamas to wear like Travis did last year. I actually asked the person who called with our surgery time and she said no, so I was a little disappointed. So I had to come up with some other "cool" things that Justin would like about surgery. It really all comes down to ice cream for him. But then he ended up getting PJs so it was cool for him too. The other kids were too young to catch on to the "coolness" factor.
Justin went in a little after 8:15 and he was out by 9 am. He was more restless than Travis and it took longer got him to calm down after medication. He did finally go to sleep after the medicine kicked in. They didn't even offer Justin a popcicle, which was fine because he wouldn't have touched it. He was one whiny baby!
We got to the room around 11 am after a slight delay. Our recovery nurse was very anxious to get rid of us. She called several times to check on the room. It turned out they were replacing the TV and then they had to touch up the paint around it, so they had to wait for it to dry! It turns out I was really glad there was a TV since I didn't get out from under Justin for most of the next 18 hours. It was me and the TV remote!
And a little napping too. Which was good since we only got about 5 hours sleep the night before!
The reasons they wanted to keep Justin overnight was because he is young, he has DS, and the reason for the tonsil removal was sleep apnea. The tonsil removal can cause swelling and that can cause the apnea to increase. So they had an IV hooked up keeping him hydrated and a pulse ox on to monitor the oxygen levels. The afternoon was non-stop alarm madness! Both the IV and the pulse ox were beeping and Randy just stood there to watch the monitors and silence them as necessary. Randy finally had to leave to head to the airport for a conference out of town. So that left me to listen to the alarms since I couldn't reach them (holding Justin and all...) In the evening the nurse finally decided to give him supplemental oxygen through a cannula. By this time, the activity in the room had gotten to Justin and he was nearly beside himself every time the door opened. It took both of us to get the cannula on him. So he had O2, IV, and pulse ox on his nose, arm, and toe. There was no moving him very far!
They turned off the O2 around midnight and while the alarms continued to harangue us, Justin did well enough to get released in the morning. The alarms were even in my dreams during the 2 1/2 hours I slept! Good thing we were up for 6 am rounds! The nurse and I managed to remove the IV and the tape on his face from the cannula, but the heart monitor stickers stayed on. I took quite a bit to get them off of Travis last year too. And the tape residue lasted at least a week. Apparently it's uncomfortable to rub on boys' chests with nail polish remover. Who knew?
Check out our tiny pile of stuff compared to our Ike pile!
I spent the whole time having flashbacks to heart surgery. The first thing that came to my head was the song " As the Mountains Surround Jerusalem". I laid there, surrounding Justin as he was sleeping, and thinking how faithful God has been surrounding us the past three years. I love being able to look back and be reminded again and again of how awesome God is and how he works in ways we can't even imagine. God is so good! And Justin is healing perfectly well (as can be expected). Don't expect too much from me this week! We are doing much snuggling!
Another Anniversary
I know, I know! Terrible picture!! We could not find anyplace with enough light to get a decent picture of our thirteenth anniversary dinner. We could not make the flash go off (we have a lousy camera!) So we will have to try again another time. I took three pictures just like this, and this was the best, so that's all I can do. Randy was impressed that all three pictures have both of our heads in them, and centered! The restaurant in the background is the place we ate. It was tasty, but the company made the evening. Both of us found awesome cards for each other, which is all we ever exchange for the occasion. I love my card collection! Randy writes the best thoughts, and if anyone else were ever to read them, he makes me look much better than I really am. What a sweetheart!! Thirteen is an odd year to celebrate, but I know the time will go so fast that it will be 25 before we know it!
Today is also Justin's tonsillectomy, so we're planning another hospital stay to coincide with our anniversary. At least we will never forget when surgery is. I will try to keep updates coming, but I don't have any way to upload pictures, so you might have to wait until we get heme for that.
Sunday, September 11, 2011
Stitch Removal - Slight Gross Out Warning
Randy got his stitches out on Friday. He was SO ready! They were itching and pulling and he wanted to scratch his thumb so badly. Since I had forgotten to get pictures up until this point, I took advantage of the opportunity to get some prime shots. We took Travis with us because it was Mommy/Travis Day and the appointment was during nap/rest time. The first thing the nurses said was, "He looks like your Mini Me!" Yeah, we know. Travis is the hit wherever we take him.
Here's the "before" picture. You can kind of tell the stitches were blue. Randy wears a band aid with a little cotton on the end of his finger so it doesn't hurt quite so bad when he bumps the end with the pin. That has really helped, but he still winces when it's thumb vs. car door.
Travis was right in there watching her pull out the stitches. He thought it was very cool. The nurse was very patient with his questions. (She has a 4-year old daughter!)
The doctor had her put steri-strips across it for another 10 days just to make sure it doesn't split or get infected. He has another 5 weeks with the pin and thumb splint and then he'll start OT to rehab the thumb. He thinks he will get some movement back, but it will not be complete. Please pray it's so close to full range of motion that he doesn't even notice.
He's the "after" stitch removal picture (before steri-strips). Doesn't it look great?? The bottom is closed, but the side and the curve right under his nail are still a little open. It wept/bled some and it has some crusties. But he is well on the road to recovery! He can shower without wrapping up his hand and in a week he can immerse it in water. Randy is ready to give it a good scrubbing!
Thursday, September 8, 2011
More Appointments
Yesterday I realized that I will have attended, by the end of this week, 5 doctors appointments and 1 surgery in the past two weeks.
But let me say, without having gone to Randy's follow-up, stitch-removal tomorrow, that they have all been really good news!
Last week started with Justin at endocrine. It's been almost 5 months since we have been there and we did the blood work before we went this time (usually it's after). She was very pleased with Justin's growth - 2 cms and 1.5 pounds, and I forget his head measurement. She felt he was doing well, and his T3 and T4 levels are still in range, although the TSH level went up again after going down last time. His growth didn't seem very significant to me, but she felt like things were still good, so we're good for another 4 months.
Then we went to check Justin's orthotics. Sometimes I have to take a picture of the play area they have set up in his office. It is Travis' favorite of all Justin's doctors. I have considered just going there to play sometime because both boys love it so much. The orthotist is a Christian too, and I think he is great. Well, he said that Justin's feet haven't grown so he just put on new velcro straps and we were good for 6 months. Then it took 10 minutes more to get the boys out the door. Not sure how the office staff gets anything done.
This week Justin had audiology appointment and it went fabulous! We saw the audiologist who we haven't seen since Justin's ABR test when he was a baby. She was so sweet with Justin. She checked and there was no fluid behind his ears so she doesn't think that tubes are warranted - Yeah! And then she did the "big boy" hearing test and had Justin put pegs in aboard every time he heard a sound. That's like combining Speech and OT and Justin did beyond fabulous. He even heard (and responded to!) some of the really quiet sounds. Travis and I were both in the sound booth with him and Travis kept wanting to give Justin the answers and tell him when to put in the pegs. I finally had to hold him and clamp my hand over his mouth! He didn't quite understand that it was a test and we needed to know if Justin could hear, not him! He was mad at me at first, but by the end he understood. Then the audiologist asked him to pick the orange peg and I had to tell her that he doesn't know that color yet. After I told her what he does know, he did just fine. Then she did body parts and he nearly fell out of his chair trying to show her his shoes! I thought it was pretty cool that he did so well with the "big boy" test. She declared him completely able to hear and good to go for another year. Whoo hoo!
Those 3 visits, combined with Randy's two, plus surgery, have filled up my days. And next week is Justin's tonsillectomy. I went to our new Wednesday night Bible class and the subject in "Balance". Boy, I could use some of that!
(P.S. Happy Three-Year Anniversary to Justin! Heart surgery three years ago today! Can you believe it?)
Yikes!
But let me say, without having gone to Randy's follow-up, stitch-removal tomorrow, that they have all been really good news!
Last week started with Justin at endocrine. It's been almost 5 months since we have been there and we did the blood work before we went this time (usually it's after). She was very pleased with Justin's growth - 2 cms and 1.5 pounds, and I forget his head measurement. She felt he was doing well, and his T3 and T4 levels are still in range, although the TSH level went up again after going down last time. His growth didn't seem very significant to me, but she felt like things were still good, so we're good for another 4 months.
Then we went to check Justin's orthotics. Sometimes I have to take a picture of the play area they have set up in his office. It is Travis' favorite of all Justin's doctors. I have considered just going there to play sometime because both boys love it so much. The orthotist is a Christian too, and I think he is great. Well, he said that Justin's feet haven't grown so he just put on new velcro straps and we were good for 6 months. Then it took 10 minutes more to get the boys out the door. Not sure how the office staff gets anything done.
This week Justin had audiology appointment and it went fabulous! We saw the audiologist who we haven't seen since Justin's ABR test when he was a baby. She was so sweet with Justin. She checked and there was no fluid behind his ears so she doesn't think that tubes are warranted - Yeah! And then she did the "big boy" hearing test and had Justin put pegs in aboard every time he heard a sound. That's like combining Speech and OT and Justin did beyond fabulous. He even heard (and responded to!) some of the really quiet sounds. Travis and I were both in the sound booth with him and Travis kept wanting to give Justin the answers and tell him when to put in the pegs. I finally had to hold him and clamp my hand over his mouth! He didn't quite understand that it was a test and we needed to know if Justin could hear, not him! He was mad at me at first, but by the end he understood. Then the audiologist asked him to pick the orange peg and I had to tell her that he doesn't know that color yet. After I told her what he does know, he did just fine. Then she did body parts and he nearly fell out of his chair trying to show her his shoes! I thought it was pretty cool that he did so well with the "big boy" test. She declared him completely able to hear and good to go for another year. Whoo hoo!
Those 3 visits, combined with Randy's two, plus surgery, have filled up my days. And next week is Justin's tonsillectomy. I went to our new Wednesday night Bible class and the subject in "Balance". Boy, I could use some of that!
(P.S. Happy Three-Year Anniversary to Justin! Heart surgery three years ago today! Can you believe it?)
Sunday, September 4, 2011
Prayers
Justin has been "praying" before meals for more than a year now. He folds his hands, bows his head, babbles, and then stops for us to say "Amen" for him. Last year when we went to visit my sister and her husband, Justin prayed and my brother-in-law just about fell out of his chair! Justin prays at every meal and he insists that we all do as well. His prayers are so sincere and I love how he folds his hands so sweetly.
Well, this week he was praying and he made the signs for "mommy" and "daddy" and said his word for "Travis" and I promise you he was praying for us! I was touched! You cannot deny that Justin knows what is going on!
Well, this week he was praying and he made the signs for "mommy" and "daddy" and said his word for "Travis" and I promise you he was praying for us! I was touched! You cannot deny that Justin knows what is going on!
Saturday, September 3, 2011
Question
A conversation with Travis this week:
Travis: Mommy, do you and Daddy fight ever?
Me: Yes, sometimes we do.
Travis: What do you fight about?
Me: Well, sometimes we just disagree about things.
Travis: Like if you want to watch Peter Pan and Daddy wants to watch Toy Story?
Me: Yes, kind of like that....
Travis: Mommy, do you and Daddy fight ever?
Me: Yes, sometimes we do.
Travis: What do you fight about?
Me: Well, sometimes we just disagree about things.
Travis: Like if you want to watch Peter Pan and Daddy wants to watch Toy Story?
Me: Yes, kind of like that....
Friday, September 2, 2011
Updates
Here's a few family updates and progress reports:
- Travis lost another tooth this week. Now he's down the two teeth bottom, front. Big gap. He's just pleased with the money he's netted so far.
- Justin moved up to an open cup this week. He's been able to do it for a while, but I've been putting off making the move so I wouldn't have to clean up so many spills. He's good at drinking, but he doesn't tip the cup far enough down after drinking. So I don't put more than about 1/4 cup in each time and then refill, refill, refill. I'd rather do that than clean up, clean up, clean up. He's doing really well! I haven't had to clean up very much at all.
- Justin also is making great progress walking up stairs. We have a staircase with spindles (and so does therapy) so he can hold at whatever height he needs. He sometimes forgets to advance his hand before taking steps, but he remembers with just a little help.
- Randy is healing well. We had to make a trip to the dr. this afternoon because the dressing was getting really loose. They cut it off so we got to see it for the first time. It looks really good! They cut from the base of the thumb up and around where he cut it and then pulled it around to stitch it. The stitches are huge and blue! And you can see the tip of the pin that's in his thumb. He said we can just leave it exposed like it is. Randy's bumped it a few times and it smarts. I believe him! They gave him a splint to wear and some gauze to wrap around the thumb under the splint. We have experimented with a few other dressings for underneath the splint and that gives him more cushion so it doesn't rub quite as much.
- I am doing just fine! The pressing needs are being met and for now, that's all that matters. God has been so good. I don't usually get much "girl" time, but I think God knew I would need it so it just worked out that I have had several evenings out with my friends this past week that have been so refreshing and encouraging.
- Travis' prayers are usually very rote, but this evening he thanked God for healing Daddy's thumb today and for taking care of him and how He knew that this would happen even before He made the world and He planned for it to be okay. So cute and honest. Travis always is very concerned with bad things happening and so last week I talked to him about Job and that made me realize that none of his Bibles have that story in them. What a shame! That's hugely important for little kids! And then guess what his lesson was about this past week in Bible class? Of course, it was Job. I am so in love with God's timing!
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