Check Up

Our last appointment we had was last week Friday. Another busy buzzing clinic! We got there 2 minutes late from our 10:00 oclock appointment to find out that it would be a long wait since Dr. Alvaraz was in the OR doing surgery. There were alot of annoyed families that came from far trying to patiently wait. We were bumped to the very last. Two hours later we finally went in to see the Dr. and give us a run down on what to do next and how Joelles AFO was fitting. I was having troubles the last week to keep her heel fitting properly in her AFO. I called Shannon to see what I could do to make it fit right. So we did some massaging on her foot and calf muscle before we put it on trying to get the muscles to relax and get her heel all the way back in her foot brace. We are slowly getting better at it. Shannon made an extra foam support to fit into her brace to help the heel stay down. The first few weeks they assured me are the toughest trying to get it to fit right, once the muscles get used to be stretched that way they have told me it gets easier to put on. Phew! I threw her AFO a few times so frustrated and fighting to get it on her. Some tears were shed and some chocolate was needed! Hopefully it will get easier....
Our next visit she'll need an x-ray again and an ultrasound on her hips.

As far as Joelle's hip brace (rhino cruiser)...well initially they told us 6 weeks, which was up...now it'll be till Sept-our next visit. This was crappy news for me. Its hot and annoying to hold her with it on but the Dr. said if we don't have it on consistently and for longer she'll need surgery. So... that was our ultimatum. Bummer yes, for the best: definitely. I have to find her more pants since she can't have bare legs wearing it in case of rashes and such. Time to put a few more air conditioners in the house for her.

A few people have asked me how the hip brace helps so I thought I'd add this bit of info :)

What is a Rhino Cruiser?

A Rhino Cruiser is a rigid brace. It is another way to non surgically treat Developmental Dysplasia of the Hip (DDH). The brace is made of plastic and foam and is fit to hold the hip joint in the correct position. It keeps the legs out to the sides (in abduction) and allows the knees to bend freely. In this position the hip sockets can be encouraged to develop properly. The Rhino Cruiser is used for hips that are shallow. It is worn to avoid hip pain, arthritis, early hip replacement/reconstruction.

Joelle's foot prints. Her 2 toes are joined and make a little heart.

In the Rhino Cruiser.

A simple example of Joelle's hips. She is loose/shallow.

Getting tired of waiting so patiently.

Eaton Lake Overnight Hike

All geared up and excited to go! Camron carried his clothes and a sleeping bag.

 Geoff has always been talking about taking Camron on an over night hike. For Camron's 7th birthday Geoff bought him a nice hiking backpack and they began the planning. Geoff wanted something fairly easy for his first over nighter so he chose Eaton Lake. It was a toss up hoping it was going to be an easy (ish) hike but it turned out alot harder than he had thought. They had a great time though!

Tree hugger!

The trail mostly followed a creek and waterfalls the whole way up.

This bridge and bench marked the halfway point.

Brother Mike came along too for the fun. It was nice to have him along for the evenings and someone else to talk to.

I love this photo! Eaton Lake in the background.

Sleeping quarters. The log on the right became a great spot to prepare food.

The waters there were crystal clear.

Time to make a fire to cook supper. 

Geoff was worried his pack would weigh too much with "fancy" food so he packed nice and light and just case Camron couldn't handle his. Mike was nice and brought up lots of yummy food including smokies!

Sun rising over the mountains

They enjoyed a nice cup of hot chocolate in the morning, can you tell?

Celebrating a successful over night hike!

On the way down Camron was quite tired, they didn't fall asleep till 11 pm and woke up at 5:30 since it was light out so soon. The trip went very well except for the way day, Camron's legs kept giving out and was really wanting to go home. When they came home they unpacked, showered and got the laundry going then crawled into bed and had a good long nap. Great way to end a fun adventure!

AFO Fitting

This past Tuesday we went to get Joelle's new rigid AFO fitted (ankle foot orthosis).

We chose a purple one with butterflies on it for her first one. It looks quite cute, kinda like a little boot for her all custom made. When we arrived Jarrod took Geoff and I too the room and showed us the molding he made from the cast he took at the hospital. He used a white crayon (the kind used for sewing actually that unravel to sharpen) to mark down to fit her chubby leg better. 

  After Jarrod made markings on the AFO he went to the back to work on it. Putting velcro and padding on it. Geoff chose the purple marble padding to go inside. While it was being worked on we waited patiently joking around and hanging out with Joelle. She loved talking to herself with big stories in the mirror.

 About an hour and a half later Jarrod was done working on the piece after a few adjustments. He fitted it on a few times for us to watch and to make sure it was going to do the job. Joelle loved all the attention and didn't mind getting it fitted on. Shannon (not pictured) came to say hi to us and we will be seeing her next visit in 10 days at BC Children's Hospital to see how things are progressing.

I think this is such an adorable picture of her! She looks proud :)

AFO: $1082 

Pharmacare Portion: $261.53

Patient Portion: $820.47

One on one time with Joelle...priceless!

Reflections

I had a person a while back ask me why I thought Joelle was born with fibular hemimelia. I wasn't sure how to respond to that question. It seemed that they wanted to pin point what went wrong and if there was a way of preventing it. I know nothing happens by chance. We have a great God, the physician and healer. I knew when Joelle was born that no matter what, He was teaching me to trust Him. He has us in His hands so why would I worry. After Joelle was born via csection and the pediatrician came to my side and told me there was something wrong with our new baby my heart sank. I wasn't sure if I wanted to see her, what if she was really deformed, I felt alone. In my head I started to pray, I choked back a few tears and began reciting Psalms in my mind while the doctors continued to sew me shut again. Breath in breathe out. What was God teaching us, what was God trying to teach me. 

My faith has grown in trusting God in the last year while pregnant with Joelle. She was a big surprise when I found out I was pregnant. We were trying to space our next baby a bit bigger. I wanted to choose when we could get pregnant again but God had another plan for us in mind and gifted to us another beautiful girl. 

A few months prior to Joelle's birth our evangelism committee put on a program called "Two Ways To Live". It was about learning the fundamental basics of explaining the gospel to an unbeliever. It went back to the basics of what it means to be a Christian. I really enjoyed the program but felt a little unsure of myself as far as spreading this good news to others. When we started out we needed to put a name in the front of our book of someone we knew that didn't know about Christ. Mine stayed blank. I felt a little guilty and came to realize maybe I am to sheltered in our "reformed" group of friends. Maybe I should get out more. But my battle to shew that away in my mind was "I'm a busy full time mom at home, I don't need to add this to my plate". I justified not having anyone on my line. I did pray about it, for God to put someone on my path so I could put my new teaching skills to work but it never happened.

This past week I told you about the family we met at the hospital that has the same condition as Joelle. When we talked to them it was great to get to know them. To talk about the dynamics as a mom going through this with our babies. What this all means for the future. We had a great talk and really clicked with them. But I was still uneasy. I had these thoughts in my head that kept telling me to talk to them about the gospel. Ever had that nagging feeling that you should put Christ in the center of your conversation and be open to others about your love for Christ. I wanted to comfort this other mom because she felt so unsure about it. She was saying how she was trying so hard to think back on what she might have done to deserved this. I wanted to speak to her about the gospel of

 John 9.

1As he went along, he saw a man blind from birth. 2His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

3“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. 4As long as it is day, we must do the works of him who sent me. Night is coming, when no one can work. 5While I am in the world, I am the light of the world.”

6After saying this, he spit on the ground, made some mud with the saliva, and put it on the man’s eyes.7“Go,” he told him, “wash in the Pool of Siloam” (this word means “Sent”). So the man went and washed, and came home seeing.

After we left our visit with the doctors and this family we went back down to our van in the underground parking lot. I told Geoff I wasn't happy with how that visit went. He felt it went very well, and it did, but....then it hit me... we need to go through this journey with Joelle with Christ always at the center. I need to put God in full glory of what will come our way. Joelle was given this and us as her parents as a way for God to be glorified. That is the purpose of this, that is our goal. No doubt, there will be difficult days for her and for us as her parents but there will be those shining days where "God might be displayed in her". It was not by coincidence that we took this course with friends in the church, it was not by chance, this was all planned by God. God was preparing us for the future He has for us. 

Psalm 139

 13 For you created my inmost being; you knit me together in my mother’s womb. 14 I praise you because I am fearfully and wonderfully made;your works are wonderful,I know that full well.15 My frame was not hidden from you when I was made in the secret place,when I was woven together in the depths of the earth.16 Your eyes saw my unformed body;all the days ordained for me were written in your book before one of them came to be.17 How precious to me are your thoughts,^a God! How vast is the sum of them!18 Were I to count them,they would outnumber the grains of sand—when I awake, I am still with you.

Overnight for 2 Appointments

Joelle was breech for many weeks in the womb and due to the breech position often times they have problems with their hips after they are born. Joelle had to get a routine ultrasound at BC Children's to check the hip joint to see if they were in the socket properly. First initial thought the technician said she looked good...but our visit to see the doctor on Friday turned out not to be the case. Joelle is now in a hip brace 20 hours a day for 6 weeks and then we will have another follow up appointment with ultrasound to check the hips again. This is unrelated to her FH. 

The ultrasound technician was fun and loved to joke around with us. We told her about Joelle's condition and she said that we seemed like calm confident parents for having 1 child (yes a bit of a chuckle inside). We told her Joelle was our 5th baby and she stopped her exam and looked at Geoff and I and said "Are you even old enough to have 5 kids!?" A compliment that we still look young I guess!

I booked a hotel in Vancouver as close to the hospital as I could. My brain function and thinking patterns have been exceptional and I accidentally booked a hotel with 2 double beds and later Geoff realized I booked under an american website making it cost way more that I had thought was my good deal. My bad! There was no way I was going to downgrade from our king bed at home to a double so we comfortably slept in different beds...We both agreed maybe we should have bought 2 double beds for our house! Ha! On Thursday we explored parts of Kitsilano and Queen Elizabeth Park. We checked out the Bloedel Conservatory and later went to the H.R MacMillan Space Centre. Both places we've always wanted to take our kids on a day trip, after being to both we realized that going with the 3 of us was a much better idea. The weather was amazing as well as the views. We had some time to get some shopping in as well.

This sums up Joelles experience in Vancouver with us. She is a 5th baby that thinks she's the first child!

Waiting to see Dr. Alvaraz and Dr. Cooper

Her smiles make up for her crankiness.

 Our long awaited appointment came to get further assessed by both doctors. Dr. Alvaraz and Dr. Cooper discussed with us the first steps we should take for Joelle. Her foot isn't sitting directly under her tibia which if untreated won't be able to bear the weight of her body as she grows. At this point they also are uncertain of her leg length discrepancy (LLD) will be, as she grows it will become more apparent so we don't know what the long term treatment will be at this point. For now, we will work on her foot so with that came an ankle foot orthotic (AFO). They cast her leg/foot for a mold that they will take to another clinic to make for her.

Jared is our AFO guy. Jared and his assistant (can't remember her name) was great and very thorough with explaining everything to us newbies. It was a good but very long busy visit. The clinic was buzzing with people coming and going. After her mold was done for her future brace that will be ready in 10 days. We had the privilege of meeting another family with Fibular Hemimilia. It was great to talk to them and meet them and share our worries and fears and the dynamics of dealing with such a rare deformity. They had a 8 month old boy going through it and showed us his brace he needs to wear. We talked quite a long time with them and getting to know them. I hope we meet them again down the road. FH is so rare its 1 in 50,000 births. We have a very beautiful special girl to watch grow up and it will be neat to connect with others who are going through this same journey as us.

Joelle finally asleep with her hip brace on. I miss the

tight newborn snuggles already...she now needs to learn to sleep not all wrapped up anymore. 

Our babies :)

Camron April 5 2008

 Alivia June 3 2010

Abigail October 12 2011

Tara April 6 2013

Joelle March 25 2015

Fibular Hemimelia

Our perfect little girl...
Joelle has now been officially diagnosed with fibular hemimelia. A little tidbit of info about her condition. Joelle has her right leg affected. Her leg is shorter than the other and is missing the fibula completely. She is missing her ankle which is part of the fibula. The discrepancy at our first visit to BC Children's Hospital we were told it is approx 2 centimeters shorter than the other leg right now.
Our visit to the Children's Hospital was not how we expected it. We were rather disappointed with the visit because we left with so many questions we had written down with no chance to talk to anyone about it. We felt very rushed with the visit with the doctor we seen. I'm not sure if when we go back it will be a better visit for us as parents and not just a number to been seen quickly. End of May Joelle goes back to see 2 doctors this time and be fitted for a brace (that's what the doctor called it). I don't know what the brace looks like or how it will fit on but we will find out end of May after her ultrasound is done. Two visits this month for her.

Fibular Hemimelia explained

Fibular Hemimelia is a partial or total absence of the fibular and is the most common form of lower limb deficiency present at birth. There are two long bones in the lower leg, the thicker one is called the tibia and the thinner one is the fibula. With Fibular Hemimelia the tibia is shorter than normal and the fibula is missing or underdeveloped. A leg affected by Fibular Hemimelia will look shorter than an unaffected leg. The tibia may be bent and the foot may also be smaller than normal, bent outwards at the ankle and may have fewer than five toes. The knee is often also misshapen and may move abnormally.

Usually only one leg is affected, with the right fibula affected more often than the left and males are 50% more likely to be affected than females.

Diagnosis and causes 

Severe cases are likely to be seen at scans during pregnancy. In milder cases it may at first be thought to be a foot deformity but when the shortening of the leg becomes more noticeable and the leg is X-rayed the full picture can be seen.  Most cases of Fibular hemimelia are thought to occur for no reason.

How can it be treated? 

Treatment will depend on the severity of the condition and how normal the foot is.

• If the foot is reasonably normal it may be possible to lengthen the leg using the Ilizarov apparatus
• If the foot is twisted outwards to the side it may be possible to correct it sufficiently using surgery
• If the foot is not sufficiently normally formed and the tibia is too short it may be best to amputate it through the ankle using procedures such as the Syme’s or Boyd amputation and fit a prosthesis. (an artificial limb)
• In cases where the fibula is present and the shortening is not severe the treatment is usually leg equalisation either by slowing growth of the other leg (epiphyseodesis) or leg lengthening.

Joelle's right foot x-ray. You can see she is missing a toe and her bones are quite out.

Getting the x-rays was a tad difficult. J moved around so much they had to use so much velcro and tape to keep her still. She screamed and didn't like it at all.

Deep breathe for me as a mom watching, but this is only the start.