Summer Adventures

Lincoln and Lacey are always up for new adventures and trying new things. They both collect stuffed animals and are almost always carrying them around and playing with them. With having great summer tempter we have been getting water activities out every day. We got the little kiddie pool out and they wanted to bring there stuffed animals into the pool with them. i figured why not. We can dry them out after. Lincoln and Lacey thought this was awesome.

 Water Art- Using water guns to trace around our bodies and create art. We love summer fun!

ER Visit

What a night!!! We had to make a trip to the ER tonight. After Oliver's VP programable shunt surgery two weeks ago, all has been going well. No signs of infection. We've been told to watch for redness and warmness by the scar, as these are signs of infection. Oliver hasn't been sympathetic, which would indicate that there would be a malfunctionin with the shunt. He's his happy little self. Then tonight I noticed a new bulge under his scar. There has always been a bump where the shunt is located... Josh and I both thought we should take him into the ER to have a better understanding of whats happening. On our drive to the ER I made a call to the neurosurgeon on-call in Calgary. When you call the neurosurgeon on-call they then page the doctor and you have to wait for a phone call back. Since we've never had to make this call before we didn't know how long we'd have to wait to hear back.  I also messaged another Spina Bifida mom who's son is two, to see if she has ever experienced this with her son. She hadn't ever heard of this so she thought we were doing the right thing too by bring Oliver in to the ER. I felt sick to my stomach and so helpless not knowing what was going on with Oliver. I just wanted to be able to help him.

 After our ER visit and contacting the nuerosugeron on-call at the Alberta Children's Hospital the doctors believe Oliver's shunt is leaking CSF fluid. They want us to just monitor it for now, making sure the bulge doesn't keeping growing. Hoping that it corrects it's self... It's so hard not knowing what's happening but just having faith things will work out.

Magrath Days Weekend

We had a great weekend with family. Josh and I started the weekend off by going to the temple. It was long over due. It's just hard when you have a little one that needs you ever 2-3 hours. I'm so glad we went and was also so ready to see Oliver after.

Magrath Days never disappoints, we had a great time. We started Saturday off with a run and walk at the Magrath fish pond. Then we got free snow cones, and watched the parade. Lincoln and Lacey loved the parade and all the candy they received. Oliver loved watching the parade too, until the fire truck at the end of the parade rang there sirens. We then spent the day at Heather and Vince's and all the Harker relatives. And ended the day off with watching fireworks. Lacey reply about the fire works, " the fire works were good but I didn't really like them."

  

Oliver's 6 Months

It's been an amazing 6 months with this sweet little boy. We love him so much.  He brings a special spirit to our home. There's so much we can learn from him, he's always happy no matter what. Even after his shunt surgery, he still had a smile.  He loves being around people and especially loves when someone will talk to him. He is really starting to babble and says ma ma and ba ba. As you can tell from his weight he loves to eat. Oliver also loves chewing on his hands, toys and blanket resulting in a drool fest. He reminds us of a bull dog. Still no sign of teeth yet. Oliver is also a blanket boy, he loves soft blankets and when he's tired he likes to pull them up to his face and rub it into his face, its so cute. 

For Oliver's 6 month immunization he CRIED! I was so happy. I know normal when your baby cries from their shots you are happy about it but for a Spina Bifida mom it's a BIG DEAL. Spina Bifida kids aren't suppose to have feeling in their legs. For Oliver's 2 month shots he didn't even flinch or cry. For his 4 month shots he didn't cry but he tensed his legs. Then for his 6 months shots he cried. Meaning he has some feeling in his legs. I'm so happy for this. I know he doesn't have normal amount of felling but there's something.

We've introduced solids to Oliver and he loves them. He just has a hard time keeping the food in his mouth when he smiles.

July 2016

We are having an amazing summer so far. We have been trying to enjoy the nice summer weather and be out side as much as possible. Lincoln and Lacey love going for bike rides, runs and checking out new parks around town. Oliver enjoys our outdoor adventures too. He loves stroller rides. He even loves being included when we are at the park, he loves the swings and going down the slides.

Oliver loves watching Lincoln and Lacey play on the park.

Lacey swimming high into the sky.

Full of smiles from going down the slide.

Ready! Set! Go! Racing down the slides.

Oliver hold's his head up on his own but not good enough to go on a swing by himself yet. We hold him so he can rest his head on us  and still be included in the fun.

Lincoln loves climbing on everything on the parks. He's our little monkey.

Lincoln got to try his new fishing rode out at the Magrath fish pond. He got it from Hudson from his birthday party.

Lacey sees josh go for runs all the time. She now wants to run with him. She's daddy's girl.

Oliver Recovery Update

Enjoying being back home and playing at the park as a family. Oliver is doing really good and is improving each day. His head is still a bit sensitive and there is a lot of bruising  tunneling/tubing runs inside of him, by his neck. We love having our happy baby back and are counting all our blessings. Thanks again for all the prayers for Oliver.

Programable VP Shunt Surgery

I laid Oliver in the nuerosugerons arms today. Which was so hard even though we knew Oliver needed this surgery, and would only benefit from the procedure. It's just hard feeling so helpless. Then you wait for what feels like forever in the waiting room. Oliver's shunt surgery went well. Doctors said he did well and will be on the mend the next few days. He's sleepy and resting.

We had a good night last night. Oliver was able to rest well and not be nauseous which is a common side affect with the meds he's been given. He's back to eating his normal amount, which is great because that puts him one step closer to being able to get the IV out that he's been trying to pull out since he woke up! He's rested lots today and we got lots of snuggle time in. Through out the day we have noticed Oliver is more himself, which we love. He went for an MRI this afternoon to see how his ventricle are draining. Everything is looking good so far and Dr. Hader is happy with his MRI results. So it looks like we will be coming home tomorrow if all goes well through the night.

Oliver still continues to do well so he got discharged today! Yay! We have already noticed him returning to his old happy self.  

Josh and I want to thank all of you for your thoughts and prayers in our behalf. We feel your support and couldn't do it without you. We feel so blessed to have such an awesome support group of friends and family. Thank you so much!!

Street Wheelers Weekend

Street Wheelers is an annual event that is held in Lethbridge, that we look forward to each summer. Josh has always been into cars, so have made it into a family activity that we do each year together. Friday Night there is a Cruise featuring parade style cruising and you watch all the neat cars/ trucks that come to town for weekend. Lincoln and Lacey are getting more and more into it, which makes it funner. Since Oliver has been suffering from hydrocephalus he was very sensitive to loud sounds so I took Oliver home early, as he would just cry and wasn't enjoying the evening.

Josh took Lincoln and Lacey to the 100 Foot Dash on Saturday morning. I didn't even attemp to take Oliver as it's usually a loud even with reeving  engines. Saturday afternoon we attended 'Battle of the bridges' car show and another car shows at Galt Gardens Sunday afternoon. It was a fun filled weekend of cars.

Friday Night Cruise

'Battle of the bridges' car show

Understanding Oliver's Spina Bifida Journey

There is no cure for Spina Bifida. Ongoing therapy, medical care and/or surgical treatments will be necessary to help prevent and manage complications and secondary conditions throughout an individual's life. Just fifty years ago, only 10% of babies born with spina bifida survived their first year. Today, with research and advances in medical technology, 90% survive and thrive!

Oliver has Myelomeningocele which is the most severe form of Spina Bifida, in which the spinal cord protrudes from the opening in the spine. In utero SB babies bodies produce too much cerebrospinal fluid as it leaks out of the opening on their back. When people with Spina Bifida have spinal surgery like Oliver did at one day old to put his spinal cord back into his spine. Their bodies then need to just to producing less cerebrospinal fluid or else hydrocephalus occurs.

Many babies born with spina bifida get hydrocephalus. This means that there is extra cerebrospinal fluid (CSF) in and around the brain. The extra fluid can cause the spaces in the brain, called ventricles, to become too large and the head can swell. There is no cure, but hydrocephalus can be managed with surgery. As Oliver’s head circumference and ventricles are increasing in size a shunt needs to be put in place. A shunt is a medical device that relieves pressure on the brain caused by fluid accumulation. 

Oliver will be having a shunt put in place on July 11. We knew this was a surgery he would mostly likely have to have (which doesn't make it any easier) and we are glad that he has been able to go 5 1/2 months without one, as the older the baby is the more beneficial the surgery can be. We will not be able to see if Oliver is a candidate for the ETV procedure like we would have like to because Oliver’s Nuerosurgeon Dr Riva-Cambrin is on holidays. Dr Riva-Cambrin is one of the only Neurosurgeons that does the ETV surgery in Canada. The neurosurgeon team do not feel like Oliver can wait for his neurosurgeon to get back in 3-4 weeks. Which is kinda discouraging. Everything with Oliver has worked out so far, so we are trying to have faith that things will keep working out the way they are supposed to. Even if it’s not how we thought it to go. We feel that our heavenly father is watching closely over Oliver. With all that he has gone through so far it has all gone very smoothly. I know and feel that this is something that Oliver needs at this time for him too thrive in life to the best of his capably.  I am thankful that we live in Canada and have access to such great health care and amazing doctors. Oliver has a special spirit about him and we love him so much. He has blessed our family in so many ways.

Waiting for a surgery date

It's been a hard week waiting to know when surgery would be. I'm glad the doctors are acting fast and Oliver's surgery is scheduled for Monday July 11th. The neurosurgeons don't feel that Oliver can wait for his neurosurgeon Dr Riva-Cambrin is back off holidays so we are having Dr Hader do the shunt surgery. We've heard Dr Hader is an amazing neurosurgeon.

I know and feel that this surgery is what Oliver needs right now so he can thrive in life to the best that he's capable of. I hate the thought that my 5-month-old baby needs another surgery but I know doing the surgery sooner the later is actually better than prolonged symptoms and possible damage. This surgery is necessary, and I'm thankful for the doctors who can help Oliver.

Oliver hasn't been him self this past week and symptoms as slowly getting worse this week. Oliver’s has just been off, his soft spot is bulging, he's more sensitive then normal, he takes longer to settle when going to sleep and doesn't sleep as long when he finally falls asleep. We have also notice in the last few days that Oliver is having trouble holding his head up. Lately he just lets his head flop/ hang to one side. Oliver is also been very sensitive to louder sounds. It's hard seeing my precious baby this way.

Myelomeningceole Clinic

We had a long busy day at myeloemeningocele  clinic. Here's an update of Oliver's day at the clinic. Oliver is 23 weeks weighting 17.6 lbs weight and his head circumference 49.3cm. So it grew 1.0 cm in a week when it's usually growing .25cm a week.

Neurosurgeon - Oliver's head circumference is still above the 100th percentile and increasing in circumference. Olivers head circumference is a concern to them at this point, so he got an MRI done to get a better understanding of what should be done. He's still a very happy and content baby. When a baby needs a shunt they look at head circumference, ventricle size and baby's well being ( irritable, vomiting, loss of appetite).... Our Nuerosurgeon Dr Riva-Cambrin is on holidays so we saw Neurosurgeon Dr Hader. From Olivers MRI results it shows that Olivers verticals are increasing as well as his head circumference. Olivers soft spot also isn't as soft and sunken like before, it's more full. With these concerns, the doctors feel that Oliver needs a shunt in the next week to two weeks. We'd like to see if Oliver is a candidate for the ETV procedure instead of the shunt. But with Olivers Nuerosurgeon on holiday we will most like have to do a shunt as he cant wait till his Nuerosurgeon to be back off holidays which is kinda discouraging. Everything with Oliver has worked out so far, so we are trying to have faith that things will keep working out the way they are supposed to. We are now waiting to hear when Oliver's surgery will be

Orthopaedic - Orthopaedic Dr.Kefer says everything looks good.  He's happy with Olivers hip rotation. He did have concern with Oliver's hips at 3 months, as he thought he had a dislocated hip but he doesn't now. Hip ultrasound at 3 months ruled that out. He will do a spine and hip X-ray at 1 year. 

Physiotherapist - The physiotherapist is happy with all the stretches we are already doing. We still need to stretch Olivers feet as much as we can. Oliver is given orthopaedic shoes, which he needs to wear as much as possible to help stretch his feet out flat.

Nephrology - No concerns with bowel or bladder. We will have a routine ultrasound when Oliver's one.

Lincoln and Lacey soon realized that the appointments weren't all that fun especially when you have 6 appointments back to back. Thanks to an amazing hospital for kids they have an awesome park out side for the kids. Lincoln and Lacey went and played with Josh while did appointments with Oliver.

Calaway/ Sheraton Cavalier Hotel

With Oliver having appointments on Monday morning we thought it would be fun to make a little trip out of it, plus Lincoln could come with us as he is out of school for the summer. And we didn't want to wake up at 4 AM to drive to Calgary with three kids. That's why we decided to go up on Sunday morning, hit Calaway park, then Oliver’s appointment Monday morning at 8 AM. Lincoln and Lacey loved Calaway so much that they rode rides for 6 hours and we could of stayed longer. It was a lot of fun, especially watching Lincoln and Lacey have the time of their life. Josh and I would just take turn going on rides with them while one of us watched with Oliver. Oliver loved watching all the rides. After Calaway we headed the Sheraton Cavalier hotel to spend the night. Even though Lincoln and Lacey had a busy fun filled day and were tired, they still wanted to hit the water slides at the hotel before bed.

Oliver loves swimming.

Waterton Springs

After our fun morning exploring Red Rock Canyon and area we went back to the camp ground Waterton Springs which is located 5 minutes north of Waterton gates. Our Canada Day Long weekend was jammed pack, we were also able to fit in tie dieing shirts, thanks to Melissa for the fun activity. I'll post pictures in a later post. Uncle Scott and Aunt Melissa also had a little boat  so Lincoln and Lacey for to paddle around in it, on the ponds near our campsite.

Saturday evening we headed back home to unpack and repack for Calgary (our trip for Oliver's Myelo Clinic).

Red Rock Canyon/ Blakiston Falls

Saturday morning on our drive to Red Rock Canyon, we spotted three bears ( a mom and two cubs).

We explored the area near Red Rock Canyon. We were going to do the Blakiston Fall hike (2km), but with n a few minutes on the hike Lincoln tripped and scraped his knee.  I  hand left the bandaids in the van so Josh, lincoln and I headed back to get a band aid. Scott, Melissa, Sara and Lacey went on ahead. Once we got a bandaid and Lincoln was up to exploring again we explored Red Rock Canyon some more. 

 These are some pictures at Blakiston Falls from Aunty Melissa. Lacey walked all the way! They said Lacey was super determined! It wasn't until we got they got back from hiking that she mentioned her foot hurt - turns out she got a blister!

They made it to the falls.

Canada Day 2016 - Waterton

We had a busy weekend. On Friday (Canada Day) and Saturday we visited (camped) with Nana & papa Harker and Scott’s family. Friday morning we did bears hump hike (3.8km) first thing in the morning. Which was a lot of fun. Lincoln hiked the whole way. Lacey needed help going up the last little bit and Oliver enjoyed the ride in the baby carrier. I love seeing Lincoln and Lacey accomplishment. They were both so proud of their achievement. After our hike we went back to the Waterton Springs camp ground and hung out for a bit and played in the river.

We made it!

It had a beautiful view of the town of Waterton.

Our plans in the afternoon were to travel to Red Rock Canyon. But both parking lots were full of people because of Canada Day celebrations they we had to pull around. Instead we found a creak to play in.  Josh and Scott were like big kids and got right into making dams and streams with Lincoln and Lacey.  We all had lots of fun.