Pretty Neat...

Last year, Ethan's neurologist mentioned that he encourages physical activities for all the children he sees and thought it would be of benefit to Ethan once he gained some weight, strength and had his spinal surgery. I shared this information with Ethan's neurosurgeon and she suggested in addition to swimming we could consider biking. When I asked her how that might work, she advised me that the local children's centre holds bike clinics and have several different options.

As you know, Ethan gained enough weight for surgery (and continued to do so with the occasional slight weight loss), had surgery, recovered from surgery and has built up some muscles as well. Yeah! :)

With that in mind, back in March of 2016, we brought Ethan to a bike clinic with apprehensive thoughts. Clayton and I had different thoughts going into the clinic and it was very interesting to see the options that are available! We talked about the inclusion but inactive options of a Wike - a bike trailer that is specifically made for people with special needs, and then we discussed an active option. They had a bike there which looks like a tricycle that has a high back to it, handle bars that move to allow easier placement on the seat and a push handle at the back which moves the pedals, and user's feet, as the bike is pushed forward. I was looking at it and thought there was no way that Ethan would be able to sit in it without laterals and a headrest. After ruling out most of the bike options that would require him to be able to bike on his own. But we did trial it...

If the cyclist is strong enough, they can also peddle on their own...but Ethan isn't quite there...

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I started to write this post back in March...time just flies these days. It is hard to believe it has almost been a year!

We ended up borrowing the bike in fall and Ethan got really good at maneuvering the handles (especially when he wanted to go home and we tried to walk past the garage) and built more leg muscles. :) He ended up really enjoying his bike rides! Unfortunately, I do not have any of the photos/videos on the computer, but will try to upload one when I get it.

To the Irish in All of us...

Surprised the family with green pancakes and milk today. Hope everyone has a great day!

On a less green note, Ethan was sick again last night. :( Like all of his previous episodes of emesis, it just looks like mucous but his vitals are still awesome?! It just doesn't make sense, but I spoke to the doctor who works where Ethan is in therapy and it was suggested that this could be related to his reflux issues, so I will inquire with his G.I. doctor.

Mystery

It sure is a mystery what is going on with Ethan the past few weeks. He has been having bouts of constipation and vomiting...likely related, but who really knows. Then on Tuesday he started vomiting and within about 24 hours threw up 10 times, the last five were on Pedialyte and a reduced feed rate. Off to the clinic to see if it is anything obvious (besides a potential G.I. bug - without the diarrhea that typically comes with such a bug). Doctor's suggestion, slow his Pedialyte down even more and try to gradually build him back up to volume and calories. Skeptical, but it seems to work. Yeah!! Good for Thursday and a little vomit with a med on Friday, could be a one off...perhaps flushed too fast, too heavy on an empty tummy - this is how this med is intended to be given - who knows?! It is the only one so no big issues, just a head scratcher. Saturday was a good one and then came Sunday morning...

We'd finally started to get some calories into him and were close to his usual feed volumes, mostly with Pedialyte. He was doing well with this on Saturday and first thing in the morning...but after he woke up, the flood gates opened again and within two or three hours, he'd thrown up four times. Back to the clinic and the doctor again suggests that all vitals are good and it could just be a relapse, try going back to clear fluids and working towards calories again. So that is what we're doing. Ethan is still quite behind on his fluids, obviously his output is reduced in both the one and two departments and we just switched his feeds from continuous to four hours with two hours off. Good thing he had a reserve of weight as it looks like he's lost weight. His little tummy is gone again. Hopefully it was just a minor relapse and he continues to improve. He was obviously feeling miserable on Sunday. :( It is so hard to see your child feel like that and not be able to do anything to help!

Although his tummy is smaller, at least he isn't as thin as he was this time last year!

He is scheduled for therapy this week, but will have to start it a day or two late to be sure he is on the mend. Add to that, we didn't have night nursing last night so I was up until 3:45 am and then got up with him again at 8:15. Thankfully, I was able to get a night nurse for tonight. Whew!

Dashing Through the Snow...

Although not on a one-horse open sleigh, Ethan did go sledding for the first time this weekend!

We borrowed the equipment for the last week of February and the first week of March and wouldn't you know it, most of our snow had melted?! We were still able to get out a bit, each taking turns pushing the sled. It was still pretty chilly, but the sun was shining so much I let him use my sunglasses. Since his hands were covered with mitts, he was not able to remove them and seemed not to mind them so much. For those who don't know, or have forgotten, Ethan does not like hats nor glasses/sunglasses...especially if they're on him! He seemed to enjoy himself except for the occasional gale force wind blowing in his face or big bump.

Clayton and Lorelei also went downhill with him a couple times. I caught the first one on video to share...

Eight and Counting...

Can you believe it? It has been 8 years or roughly 2,920 days since Ethan came into this world! Who would have known how much life would have changed for us in those years? Who knew how busy things could be; how much concern, pain, joy and love we would feel; how much we would learn; kindness we would experience; how strong we would grow as a family; how many surgeries and procedures we would go through with him; how many hospital admissions; how much sleep we would miss out on; the joys of a good night's rest or a runny nose that did not turn into anything more; the challenges around discrimination which we have found to be alive and well in 2015; the amount of ignorance, cruelty and hate that abounds...thankfully although these last few negatives have touched our lives, we remain a happy and strong family unit. For all the negative people out there, those that are not far outweigh these experiences. They are not the focus of this post but I do feel they bear mentioning.

There have been many positives in Ethan's year that are far more deserving of attention. This has been the second year that Ethan has been going to school. Last year he was only able to attend about 32 days of the whole school year, but this year he has attended 24 days prior to the holidays and in early January started with a home instructor so has continued with schooling about four days a week. This year we have been lucky enough to have: a very special Personal Support Worker (who has been working with Ethan for about 2 years during the day) be his dedicated support; his weekend support worker (who has been with us for a long time) continue to encourage and push him to achieve more and be a great support for our family; an amazing home instructor who can see his strengths and is pushing him to achieve his school goals; a wonderful new support person has also started working with him; great OT, PT and nursing supports as well as the addition of a Speech Therapist. Despite that he sometimes tests his boundaries, he really enjoys working with each of them and smiles when he sees them. This year saw a few more firsts for Ethan, he went to the movie theater to watch a movie as part of a birthday party (he was at Lorelei's previous birthday party but couldn't really participate, but a movie just about anyone can participate in) and went to the beach for the first time. Another awesome thing that happened for Ethan this year is through the generous support of some people/organizations in our life, we were finally able to get Ethan's specialized hospital bed. This is just too awesome to mention in passing so I will be doing a post on this alone.

From left: celebrating his 7th birthday, post surgery, recovering from surgery, in his new bed, at the beach and today.

Last year it was a rough start with us celebrating his birthday in hospital as he recovered from Influenza A, RSV in March, two surgeries in July for a spinal rod revision followed by a two week stay (after only being discharged two days prior) due to a significant wound infection which required IV antibiotics or 4 I.V.s before he had his 20th surgery to get a port-au-cath, a total of 6 weeks of IV antibiotics (four of those weeks at home with us learning how to change the bags, flush a port and work an IV pump) and another hospital admission in December for a respiratory illness but he has come a long way since all of this! He has gained weight and become stronger. He has been spending time in his standing frame and was recently refitted for his walker (which went better then I anticipated). Among other things, he is reliably able to 'count' from 1-10 and 10-1; recognizes digits from 10-20; knows how to spell his name, knows shapes; knows the letters of the alphabet; can sort colours, is enjoying the learning process and is relearning his communication device (which was recently updated).

Surprisingly with all his admissions, 2015 was the first time we celebrated Christmas (and his birthday) in hospital. Staff made sure his birthday did not go unnoticed making him feel special by singing Happy Birthday and giving him a card and a kind gift. At Christmas time, staff, families and local organizations make it a magical time for children with a Christmas dinner, gifts and holiday cheer. True to Ethan style, he was discharged the same day and we were home in time to enjoy a McDonald's supper.

Simply put, he is amazing! But I might be a little bias on that...

Happy birthday Ethan, we look forward to all the wonderful things this year will bring! Stay strong, stay happy, stay healthy!

Lots of love little man!

Happy Holidays!

Wishing you and yours a very Merry Christmas and a happy, healthy and safe New Year!!!

Out of Critical Care...

It has been a long journey but Ethan is now out of critical care and up on the regular floor for the remainder of his recovery. He was technically well enough to go up earlier but there were no beds available.

Last Friday, Ethan returned to the O.R. to complete the surgery started on Tuesday. It took them longer then anticipated (4 hours), but they felt they were able to get a decent correction with the new spinal rods. His blood pressure and other stats remained stable during surgery. After surgery he returned to the critical care unit for recovery. While there, he had to start the low blood pressure medication again (which seems to be what happens to him when he gets out of spinal surgeries), he required more blood products and they gave him some calcium and potassium supplements by I.V.

When he came out of the first surgery, he had three I.V. sites and over the course of last week, two of them have been removed. They were able to extubate him (remove the breathing tube) on Wednesday and he has been on room air since yesterday. They were also able to remove his catheter on Wednesday and he has been going well on his own.

During the two surgeries and while he was having troubles with low blood pressure they were giving him lots of fluids to try and bring up his blood pressure/keep him well hydrated. Unfortunately, much of the fluid ended up third spacing (which means that it was collecting under his skin instead of flowing through his veins and then out with his urine) and this made him super puffy! (Anyone who has had water retention during pregnancy knows what this looks and feels like!) He was swollen from head to toe. I was surprised by how heavy it made him! It was hard to move his limbs and it felt really weird when you touched his skin. It took a long time, but he seems to be pretty much back to his normal (slightly too skinny state) as of today. It is weird, we were so used to his usual size that when he got so puffy it really concerned us and now that he is back to his usual size, I'd like to see just a bit of that weight back on so his ribs and other bones don't protrude so much.

You can see how puffy he is in this photo, especially in his arm, chest and eyes. This was taken after his first surgery. The scars on his eye are due to the tape they used to keep his eyes shut during surgery. He has been super sensitive to tapes lately. They used a different technique for the surgery on Friday which was much gentler on his skin.

When compared to Clayton's hand, you can see how puffy his hand was earlier this week.

 



Now he just has to finish his antibiotics and tolerate sitting in his wheelchair and then he can come home. :)

Thank you for all the good thoughts that were sent over the past 11 days, they are greatly appreciated!