Okay, I must admit this might be one of those posts that embarrasses Ethan when he is older and I won't be including any pictures with it either.
I'm going to start by saying that when Ethan was born, I was surprised at how many crevasses a boy can have in the diapering area. I thought it would be easier than it was with Lorelei...but boy was I wrong! Add to that he had an inguinal hernia repair when he was really little on the right hand side and I figured the worst of it was done with...(I'm going to totally overlook puberty because that scares me right now). Well, we just got home about 1/2 an hour ago from a 6.5 hour visit to the ER. Ethan had developed some strange symptoms which prompted our visit and he came home with a diagnosis of hydrocele. To limit his embarrassment, I will just tell you that it is similar to a hernia. What it does mean for him is that we're to consult with surgery in the next two weeks and this puts a whole new surgery in his future to repair the hydrocele. On a plus side, it doesn't require emergency surgery and allowed us to come home again tonight.
During the imaging they did to confirm the diagnosis, they captured part of his spine in an x-ray...boy does it look bad without the brace on! We meet the orthopedic surgeon next Friday to see how he feels things are progressing...
Thursday, October 18, 2012
Tuesday, October 16, 2012
August Outing
This is quite late in coming...and I must admit mom has been very patient waiting for this update. She knew that Ethan got a sun burn and it had something to do with something we'd done with him on a weekend. But that was the extent of what she knew...she did ask a couple times about the update but I think has resigned herself that these things sometimes take time. ;)
Honestly, I've been excited to blog this post but things have been quite busy here and I never seem to get enough time to sit down and write. As it is this took several tries to complete.
The end of August we took the kids to a safari park a couple hours away. You read that right, we actually took Ethan somewhere that didn't involve medical care, therapy or something else local!! I must admit I was a bit nervous to bring him...but my main concern was more how he would tolerate being in his wheelchair and car seat for so long. A lot was hinging on his success...if it failed, Clayton would get to say "I told you so!" and we would likely not try to take him elsewhere. If we succeeded...that would open up more doors for him! I won't keep you in suspense, he did GREAT!!! I think he had a wonderful time and only got frustrated at the end of the day, but I think that was mainly because the sun was shining right in his eyes and he couldn't see the elephant attraction we were watching. After that we packed up and went home. He even tolerated having his brace on for a good while. He did sweat in it, but didn't complain! You may notice the canopy on his wheelchair is a bit low, we have since fixed it to be a better fit...but we did not want to leave him uncovered.
We started the day with a bit of a negative...that in my mind ended okay. While walking by a little girl (likely around Lorelei's age) I heard her say to her father, "Look at that funny looking boy." (Or something to that effect, my memory has not fully retained this slight against my boy.) But Lorelei turned around and said, "He has special needs, and he's my brother!" She said it as proud as could be and almost moved me to tears. I told her how proud I was of her to have said that and stood up for her brother! :) We did get many more stares but that was the only time something was said loud enough for us to hear. It got me thinking...really, are wheelchairs that uncommon? It wasn't just the kids who stared but adults too.
When we arrived, Lorelei headed straight for the water park to cool off a bit and as she said it would allow her time to dry up before we left.
We then watched the elephants make one of their daily trips to the watering hole to cool off. Unfortunately, I'm not sure Ethan got to see much of them since we were so far back and there were a lot of people blocking the way.
Next we boarded the bus for a tour of the grounds. It was neat to see his wheelchair tied down on the bus, we'd never done that before. He enjoyed watching people move around on the bus to try to get pictures, but I'm not sure how many animals he actually saw. Every time we would try to point one out, he would look at us instead.
If you notice, there was an ostrich that came right to his window and hung out there...I think he saw it make its way to his window but when Clayton tried to point it out he turned away and did not look back before the bus had moved on. :(
We took in all the different shows they had to offer.
And I grabbed some candid shots...
Lorelei went into the petting enclosure and pet goats, llamas and deer.
Honestly, I've been excited to blog this post but things have been quite busy here and I never seem to get enough time to sit down and write. As it is this took several tries to complete.
The end of August we took the kids to a safari park a couple hours away. You read that right, we actually took Ethan somewhere that didn't involve medical care, therapy or something else local!! I must admit I was a bit nervous to bring him...but my main concern was more how he would tolerate being in his wheelchair and car seat for so long. A lot was hinging on his success...if it failed, Clayton would get to say "I told you so!" and we would likely not try to take him elsewhere. If we succeeded...that would open up more doors for him! I won't keep you in suspense, he did GREAT!!! I think he had a wonderful time and only got frustrated at the end of the day, but I think that was mainly because the sun was shining right in his eyes and he couldn't see the elephant attraction we were watching. After that we packed up and went home. He even tolerated having his brace on for a good while. He did sweat in it, but didn't complain! You may notice the canopy on his wheelchair is a bit low, we have since fixed it to be a better fit...but we did not want to leave him uncovered.
We started the day with a bit of a negative...that in my mind ended okay. While walking by a little girl (likely around Lorelei's age) I heard her say to her father, "Look at that funny looking boy." (Or something to that effect, my memory has not fully retained this slight against my boy.) But Lorelei turned around and said, "He has special needs, and he's my brother!" She said it as proud as could be and almost moved me to tears. I told her how proud I was of her to have said that and stood up for her brother! :) We did get many more stares but that was the only time something was said loud enough for us to hear. It got me thinking...really, are wheelchairs that uncommon? It wasn't just the kids who stared but adults too.When we arrived, Lorelei headed straight for the water park to cool off a bit and as she said it would allow her time to dry up before we left.
We then watched the elephants make one of their daily trips to the watering hole to cool off. Unfortunately, I'm not sure Ethan got to see much of them since we were so far back and there were a lot of people blocking the way.
Next we boarded the bus for a tour of the grounds. It was neat to see his wheelchair tied down on the bus, we'd never done that before. He enjoyed watching people move around on the bus to try to get pictures, but I'm not sure how many animals he actually saw. Every time we would try to point one out, he would look at us instead.
If you notice, there was an ostrich that came right to his window and hung out there...I think he saw it make its way to his window but when Clayton tried to point it out he turned away and did not look back before the bus had moved on. :(
We took in all the different shows they had to offer.
And I grabbed some candid shots...
It was pretty neat at the one attraction, there were a couple birds that ran into a pen that Ethan saw and he kept watching the pen for them to come out again (as seen above). I was so happy he noticed them.
Lorelei went into the petting enclosure and pet goats, llamas and deer.
Wednesday, September 5, 2012
Not to be Left Out
Lorelei too has been losing some teeth lately. Bet you can't guess which ones...
It is crazy how quick those two came out. She wiggled one out at bedtime and then the following day she touched the other one and it came out. The tooth fairy was very kind to her. (On a side note, I should remind her she has forgotten some of Ethan's teeth...) Lorelei can be very optimistic at times. The bright side for her is that now she can make a cute bunny face.
It is crazy how quick those two came out. She wiggled one out at bedtime and then the following day she touched the other one and it came out. The tooth fairy was very kind to her. (On a side note, I should remind her she has forgotten some of Ethan's teeth...) Lorelei can be very optimistic at times. The bright side for her is that now she can make a cute bunny face.
Saturday, September 1, 2012
A Great Week
In mid-August Ethan attended a summer camp for the first time ever! It was a gym and swim camp which started with crafts and he had a great time, which pleasantly surprised us. I wasn't sure how much he would enjoy the crafts and gym portion...but then had a hard time picturing how they would adapt the gym portion. It is really neat what is out there... I went with him to the camp to do his feed/meds and so got to observe much of the camp. The downside to his feeds running as long as they do is that he wasn't able to get into his walker much for the gym portion.
Ethan doesn't often have a lot of room to roam around in and I think he was enjoying the freedom of movement at camp. The door knobs were of particular interest for him on the first day.
Ethan (and most of his friends at camp) enjoyed the pool session the most. It was Ethan's first time back in a pool in about 2 years. At first he was just getting used to the different sensation but started to feel more comfortable on day two and just kept going all week; splashing and kicking his feet. He had a wonderful volunteer helper working with him. The final day of camp they had a treasure hunt with a pirate theme. Ethan's tattoo stayed on for a long time, until I finally removed it - which surprised me in comparison to Lorelei's tattoos...I guess that is the difference when you use your hands and wash them a whole lot.
Ethan doesn't often have a lot of room to roam around in and I think he was enjoying the freedom of movement at camp. The door knobs were of particular interest for him on the first day.
Ethan (and most of his friends at camp) enjoyed the pool session the most. It was Ethan's first time back in a pool in about 2 years. At first he was just getting used to the different sensation but started to feel more comfortable on day two and just kept going all week; splashing and kicking his feet. He had a wonderful volunteer helper working with him. The final day of camp they had a treasure hunt with a pirate theme. Ethan's tattoo stayed on for a long time, until I finally removed it - which surprised me in comparison to Lorelei's tattoos...I guess that is the difference when you use your hands and wash them a whole lot.
It was a really great experience for Ethan and I hope he can do it again next year!
That week was a rough one for us. Besides illnesses that arise and any serious medical issues, which I think we typically handle in stride, the hardest time for us is when we are sleep deprived. For about a two week period Ethan wasn't sleeping well through the night, waking for hours on end and not always going back to sleep. He pulled at least two of the latter nights the week of camp and that pushed us over the edge. It was later in that week that we found out what could have been contributing to it...
If you look really closely you might notice that his lower gums have whitish spots on them... Ethan is growing his adult teeth! I suspected this the day before his dentist confirmed it at a routine follow up appointment. It has been almost two years since Ethan first lost a tooth. But what the dentist went on to tell us, surprised even me! Ethan has pushed through his bottom two 6-year molars. As the name implies they are typically grown later than 4 1/2 years old!
Thankfully, Ethan rounded out the week with a couple good nights of sleep which we thoroughly appreciated!
Friday, August 10, 2012
Continuing with Good Appointment News...
Ethan's oncologist has decided that our follow up appointments will be pushed back from every 6 months to annually. Our next appointment of the month was with Ethan's Orthopedic Surgeon and he is happy with the correction we're getting with Ethan's new brace, which means we will be able to hold off on casting/surgery. We will see him again in October to be sure the brace is still keeping his spine stable. We have managed to increase his brace time to 7-9 hours a day and need to work towards the end goal of 18 hours per day. His final hospital appointment in July was for a bone density scan. Although the official results are not back yet, it seems that his bone density is improving...which is great news especially since his weight bearing time has been cut in half from December 2011. Ethan's OT brought us a bath seat to try and Ethan seems to enjoy it.
Ethan is employing his sleep deprivation torture techniques again, and it slowed me down...and I missed a great photo opportunity. The other day I looked at him and he had the bottle from his feeding pump off and by his mouth while his feed was running. I guess he wanted to try having it by mouth again. ;) Just after I got there he tossed the bottle and managed to put more air bubbles into his line that I then had to clear.
Lorelei has also had a busy summer including a two week art camp. She had her gallery show the end of the second week. She was pretty pleased with her progress, and we think she did a great job too! Part of her show day was to have one of us do a craft with her describing the technique. Since part of the craft was to dip your finger into glue, I volunteered Clayton to do it. (Someone had to be available to take pictures too. ;))
The start of this month saw another statutory holiday. Lorelei, Clayton, Uncle Jon and I headed to a nearby beach. In the 12 years Clayton and I have lived here we've never really made it to the beach. Now that we've scoped out the area, we hope to bring Ethan sometime. There were lots of waves and Lorelei had a blast!
I think Clayton loved being at the beach again too...although his one complaint was that it doesn't smell the same as the ocean... He's already planning our next visit.
Where Clayton & Uncle Jon first set up the umbrella they disturbed some old drift wood with a family of frogs. I think they had some lasting anger issues towards us as they kept jumping at me (we'd moved the umbrella about 6 feet away)...but it could be they liked the way I shrieked like a little girl when they got too close.
In the end we had one that burrowed under Clayton's sandal and we were able to co-exist during our stay at the beach. I was the only one who managed not to get burned that day.
Ethan is employing his sleep deprivation torture techniques again, and it slowed me down...and I missed a great photo opportunity. The other day I looked at him and he had the bottle from his feeding pump off and by his mouth while his feed was running. I guess he wanted to try having it by mouth again. ;) Just after I got there he tossed the bottle and managed to put more air bubbles into his line that I then had to clear.
Lorelei has also had a busy summer including a two week art camp. She had her gallery show the end of the second week. She was pretty pleased with her progress, and we think she did a great job too! Part of her show day was to have one of us do a craft with her describing the technique. Since part of the craft was to dip your finger into glue, I volunteered Clayton to do it. (Someone had to be available to take pictures too. ;))
The start of this month saw another statutory holiday. Lorelei, Clayton, Uncle Jon and I headed to a nearby beach. In the 12 years Clayton and I have lived here we've never really made it to the beach. Now that we've scoped out the area, we hope to bring Ethan sometime. There were lots of waves and Lorelei had a blast!
I think Clayton loved being at the beach again too...although his one complaint was that it doesn't smell the same as the ocean... He's already planning our next visit.
Where Clayton & Uncle Jon first set up the umbrella they disturbed some old drift wood with a family of frogs. I think they had some lasting anger issues towards us as they kept jumping at me (we'd moved the umbrella about 6 feet away)...but it could be they liked the way I shrieked like a little girl when they got too close.
In the end we had one that burrowed under Clayton's sandal and we were able to co-exist during our stay at the beach. I was the only one who managed not to get burned that day.
Thursday, July 19, 2012
Surprise Appointment News
So, something weird happened today...something that generally doesn't happen... Ethan dropped a specialty! We had recently picked another couple up and both sounded like they planned to keep him on longer, but today his Immunologist said his blood counts again show a bit low on the fighting viruses part but that it isn't low enough to explain why he gets sick so often. She thinks it is attributable to other things going on for him. She will do up her letter stating that if he catches specific viruses then she will get involved again. But from her point of view he does not have an immune issue. (We're still no further ahead on how to keep him healthier.) The good news from the appointment is that he does build antibodies and does it well with the vaccines, etc he's had...so she thinks it stands to reason that he should be able to build antibodies to viruses unless they have mutated.
Happy Birthday!
Lorelei celebrated her 7th birthday this weekend and celebrated for the whole weekend. On Friday night she got to pick dinner (McDonald's of course) and she and I watched a movie together. On Saturday her uncle came to visit and she got to start early with her present opening. She saved Ethan's present for the last "because he's the best"...I'm guessing from her reaction that she thought he gave the best present too. ;)
She then had a Skype conversation with Omi as she opened her presents from Germany. She put the Playmobil sets together right away and has played with them just about daily!
Never one to leave the other child out, Omi sent a couple thing for Ethan to open too. He took longer to open them, tossed the maraca but played with the truck for a little bit which I was able to capture on film.
Lorelei rounded out her evening with a tiny cake and a night in the tent with Daddy. But the air mattress deflated through the night and they were in the house before 6 am the next morning. Neither Ethan nor I noticed them returning to the house as we slept in our beds.
The next day she had her party with friends. The party was smaller this year and I think it was the perfect size for her to interact with everyone. From what we saw, they all really enjoyed themselves! It was a great success and Lorelei was thrilled to open her presents at home later in the day. Her friends were very generous and she loved every present!
She then had a Skype conversation with Omi as she opened her presents from Germany. She put the Playmobil sets together right away and has played with them just about daily!
Never one to leave the other child out, Omi sent a couple thing for Ethan to open too. He took longer to open them, tossed the maraca but played with the truck for a little bit which I was able to capture on film.
Lorelei rounded out her evening with a tiny cake and a night in the tent with Daddy. But the air mattress deflated through the night and they were in the house before 6 am the next morning. Neither Ethan nor I noticed them returning to the house as we slept in our beds.
(The plates are dessert plates not dinner plates!)
The next day she had her party with friends. The party was smaller this year and I think it was the perfect size for her to interact with everyone. From what we saw, they all really enjoyed themselves! It was a great success and Lorelei was thrilled to open her presents at home later in the day. Her friends were very generous and she loved every present!
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