Surgery Complete!

Kids are amazing.  Maddi did so well throughout the whole process.  Here's how it went...

We had to be at the hospital by 8am.  Maddi was not able to eat or drink anything other than clear food and fluids after midnight and until 8am.  We knew that we would likely have to wait a while and that she would fade quickly if she went too long without eating or drinking so we tried our best to get her to drink some apple juice but it wasn't really happening.  She has never been a juice drinker so we couldn't push the issue.  If only you could explain to a toddler that this would be their last change to drink for hours!!

We checked in at the hospital around 8, and we were sent up to day surgery.  We headed off to find the appropriate elevators that would get us up to day surgery.  By this point my "flight" response was already in high gear, let me tell you.  I have not ever been comfortable in a hospital, and I am always looking for the nearest exit where I can make my escape!  So when we boarded the haunted elevator, let's just say that it was instantly full on panic attack mode.  We hit the button to go up, it went down, then up, then down then up then down and this went on for what felt like forever, and meanwhile miss cool as a cucumber, aka me, (haha!) was hitting emergency help buttons, door open buttons all while trying to grab my cell phone to call 911.  Eventually the elevator snapped out of it's frenzy and got us to the right floor, no emergency personnel needed.  Phewf!!

We got to the Day Surgery ward where we waited...and waited...and waited...All the while maddi was becoming more and more irritable.  We finally got called and we changed Maddi into the standard issue stripe pajamas.  After a little more waiting, it was finally her turn to head down to the holding room for surgery.  We met with the anesthetist, and then her surgeon (Dr. Dzus) and we were able to ask some questions.  This was our first chance to talk to her surgeon since the very brief visit we had when she decided to book Maddi in for surgery.  One thing I had been worrying about was what would happen to the severed tendon?  What happened if someday there was an opportunity to try a therapy or surgery of some sort that required having the Achilles' tendon in tact?  We learned that no matter what, the tendon will always re-attach itself.  So the surgeon's plan was that she would sever the tendon and also remove about a cm of length to prolong the amount of time before the two ends would reconnect.  This will hopefully mean it would be a while before she would need this surgery again, if ever.

The anesthetist gave us the option to have either Greg or I go in with her to hold her while they gave her the gas.  Not feeling like this was something I could handle in that moment, I quickly nominated Greg.  I am so glad that he was able to go in with her.  We had heard that sometimes they don't let anyone go in.  So he donned the suit required to enter the operating room, and then they soon came to get them and take them back.  This picture was right before heading in:

We headed to the waiting room where we would hang out until they called to say one of us could come in to recovery.  It was going to be a really quick procedure so we stayed put knowing that the call would come soon.  We had been warned that toddlers sometimes wake up from anesthesia flailing and upset, and maddi lived up to the somewhat.  They called us in after she was extubated and was somewhat lucid.   She was quite upset when she woke up and was trying to rip the IV from her arm.  She was truly in an inconsolable state.  It was quickly clear that it would have to just run it's course.  We've seen this before the odd time when she's overtired at supper time!  Thankfully she wasn't in any pain, as she has no feeling in the area operated on.  Although she kept saying "owie" but it was just the IV that was bothering her.  The recovery room nurse wanted to give her morphine but I politely declined.  Before long she was enjoying her popsicle, smiling again and we were ready to be wheeled back to the day surgery ward.

She was given her favorite food, toast with peanut butter and she perked up considerably.  We were able to leave before too long, thankfully avoiding a second ride on the haunted elevator.  We went back to the hotel where we kept her contained in the bed for the rest of the afternoon.  Later that evening she was ready to move around so we let her crawl around on the floor and the cast lasted all of about and hour.  It wasn't long and it was falling off.  The following morning we called to find out what to do and it turned out that a visit to RUH emergency was our only hope of seeing an orthopedic surgeon.  Thankfully it wasn't a long wait and we were on our way upstairs to the casting room.  This time they did a cast all the way up to the middle of her thigh.  It's too bad she needed such a big cast but we are glad that this one is staying on without issue.

All in all everything went very well and we are so thankful for the team of doctors and nurses and other support people looking after Maddi that day.  This was a simple surgery but we are glad to have it done and over with none the less.  We are also very thankful for everyone's well wishes, prayers and positive thoughts.  It is all so very uplifting and was exactly what we needed.  We are so thankful to have so many amazing, caring friends in our lives.

Surgery Next Week

Next week we will be taking Maddi to saskatoon for surgery.  She is going to have a heel cord release which is fairly common for kids with spina bifida.  Her Achilles' tendon is so tight that her right foot will no longer go into a neutral/flat position, it is always pointed. We didn't get much time to talk with the surgeon about the procedure, so I don't know many details, but basically what is going to happen is her Achilles' tendon will be severed and they'll sew her back up.  Part of me is wishing I would have asked more questions...like, what happens to the tendon once it's severed, as an example.  Of course all the important questions come to mind several days after the opportunity to ask them.

Thankfully maddi shouldn't feel any pain.  She will be under general anesthesia for the procedure and then she will wake up annoyed that she has a cast on, at least we hope it will be that simple.  For those who saw the video of her little fit in walmart, I am envisioning there will be some forceful pointing as she is telling us to take the cast off her leg. If you haven't had the pleasure of watching that video yet, here you go: http://youtu.be/hVp8oKOnXCg.

Maddi is a trooper and I am sure she will do fine.  She has an amazing ability to be resilient and I am sure that this time will be no different. She'll be dragging that cast along in no time.  Our hope is that after she heals from this procedure her braces will stay on her foot and she'll be able to wear them more often.  She is starting to pull herself up on furniture all the time but she stands on the sides of her feet. Having her braces on will keep her feet in a proper position.  This should also help her make more progress with her walking. With baby sister getting closer to learning how to walk, maddi is more and more interested in walking all the time.

Next week we will will be in saskatoon tues-fri, the actual surgery will be on Thursday. Thankfully there is no overnight stay in the hospital required. I will try and write a quick post next week to keep everyone posted on how things go.

Meaghan

We're back!

I should probably re-name this blog "What Happened to the Lawrences"!  I am not even sure where to start with an update, that's how long it's been.  Although it seems like yesterday I last blogged, that's how fast it flew by!  When we last left off, I had just gone back to work and Maddi was celebrating her first birthday.  Maddi is now two and a half, and I am over 6 months into my second mat leave!

Maddi has been doing well and is growing like crazy.  We have added more pieces of therapy and mobility equipment to the mix over the past year.  She now spends a bit of time everyday in a brace called an HKAFO (Hip, Knee, Ankle, Foot Orthotic). I will save explaining what it looks like and post a picture instead:

She still spends time in her standing frame/parapodium:

 

 She uses a wheelchair:

She has a little cart that she uses on outings with the day care:

She still has her afo's and now has some wraps/splints that go on her leg and keep her knees straight.  In this pic she is using them with a set of parallel bars on loan from the Spina Bifida Association of Saskatoon which we are members of:

Maddi is one busy girl between getting in and out all this equipment, and doing all the other things two year olds do!  Maddi still attends the Natural Wonders Early Learning Centre Monday to Friday and she loves it.  We are so thankful for Steph, her one-on-one caregiver there.  Maddi absolutely loves her and we are so grateful for the wonderful care she gives Maddi.  Steph attends Maddi's physio appointments with us and has been learning how to use all her equipment so that she can do therapy sessions with Maddi two-three times per day.  The daycare has been very accommodating and we are so thankful for that.  However, we are looking forward to fall 2014 when Natural Wonders will be opening a new daycare in the brand new school.  Besides being a new beautiful space, it is going to be completely wheelchair accessible!  The current centre is not wheelchair accessible which does cause some issues, so we are counting down the days until the new centre will open!

While Madison has made a lot of progress lately, she still has a lot of work to do.  Mobility-wise, crawling is still her preferred method of getting around the house or the daycare.  Outside she uses her wheelchair, or her hand & foot powered bike:

She is getting better at climbing up and down stairs independently, she climbs in and out of her mini club chair, and we frequently catch her pulling herself to stand, which sounds like a great thing, but she does it without braces on so she ends up "standing" on the top of her foot.  Not so great!  We have struggled over the past year and a half to find AFO's that stay on her feet while she is crawling.  With the help of one of Maddi's physiotherapists, Michelle, we have found a couple of different styles available to order from the USA that we are hoping to try.

We also have a couple of other pieces of equipment in mind that we have been talking to Maddi's therapists about.  One is a dynamic stander called the Rabbit that is basically a parapodium with big wheelchair wheels that she could use to move herself around.  The benefit of this would be that she would be more motivated to stay standing for longer as she would be able to move around easily.  In the parapodium she is totally stationary and therefore gets bored quickly.  Right now, the longer Maddi stays in a standing position, the better it is for her body.  Especially now when she is so young and growing so quickly.  The second piece of equipment we have been looking at is a walker called the Rifton Pacer which offers some support for her.  Unlike the basic walker she uses now, this one would have a pelvic support/sling that would support her weight if she needed to take a break or would catch her if she lost her balance.  The discussion we have been having with Maddi's therapists is that this piece of equipment would help her build confidence with her walking and hopefully encourage her to walk more.  We have been having trouble lately convincing her to walk with her HKAFO and walker as it seems that she is unsure of herself and her balance when she is using them.  It is our hope that she would feel more stability in the pacer and giving her more motivation to walk.  Unfortunately neither of these pieces of equipment are covered through the provincial program so we would be paying thousands out of pocket.  We are hoping to get an opportunity for Maddi to at least try them out and then we will decide what to do.

Aside from orthopedic issues, the biggest thing we deal with is maddi's bowels and bladder.  Late 2012 she started developing UTI after UTI and so this spring it was time to start catheterizing her on a regular basis as the infections were caused by her bladder's inability to empty.  She is now "cathed" 4 times per day and this has really helped cut down on the infections.  Steph at the daycare caths her twice a day so we are very grateful that she was willing to take this on!  Otherwise greg or I would be running to the daycare twice a day to cath her.  Thankfully she still does not have any reflux from her bladder to her kidneys which is a major concern for people with Spina Bifida.

As far as bowels go, let me first explain that it is the nerves at the very end of the Spinal Cord that control bowel and bladder function.  Because the very end of Maddi's spinal cord did not develop properly, her bowels and bladder do not function properly.  For this reason we are going to need to begin a bowel care program which will keep her clean.  Because people with Spina Bifida often do not have bowel control, they are prone to constipation and need help to clear out their bowels.  For now she takes a daily dose of "Relaxa" which is a laxative.  Eventually we are going to need to start a program of daily enemas which will keep her clean.  Unfortunately this is the one area where we really don't have a medical specialist to help us out.  This is really unfortunate because it really is a big, ongoing issue that we could really use some help with.  We have heard from many parents that the Colorectal Clinic at the Cincinnati Children's Hospital is the place to go.  You go for a week and by the end of it you leave with a specific bowel care program that will work for your child.  They take an x-ray of your child's bowels everyday so that they know for sure things are working properly.  We are exploring this as an option but are hopeful to find someone closer that would help us achieve the same result.

I am sure there is something I missed but this should bring you up to speed on how Maddi is doing.  Hopefully I can get into the swing of doing shorter more frequent updates so that I can avoid these long posts!

Next post I promise to introduce everyone to the newest addition to our family and let you know what she is up to!

1 Year Ago

I woke up around 4am as I had been every day for the last few weeks of my pregnancy. I was officially one day overdue and had no clue that we would be meeting our precious little girl that evening. I got up and went to sleep ont he couch until Greg got up for work, then I moved back to the bed so I could sprawl out. I quickly got annoyed though because something kept waking me up. I sluffed it off as gas pains and tried to go back to sleep. Around 9:30 I realised that I was waking up at 5 minute intervals.

By 10:30 I knew I was in labor. So I called Greg as calmly as possible and told him that he better clear up his afternoon!! Little did I know, I should have told him to come home immediately. By the time he got home at noon my contractions were 4 minutes apart, lasting for a minute and had gone on for an hour! It was time to go to the hospital. Greg called Maud the midwife to confirm that we should head down to the hospital and she gave us the go ahead to head down.

I didn't have everything I needed in my hospital bag so I was trying to get around the house and fill that up, all the while having contractions that were dropping me to the floor. It was awful, I was cursing at myself for not having it ready to go. I figured I was ok because I had a list sitting on top of all the things that still needed to be packed. Well try focusing on reading a list and finding items around the house while every few minutes it feels like someone is taking a knife to your insides and a watermelon wants to drop out of you. Next time my bag will be packed and ready to go!!

So we get to hospital after a 2 minute drive that felt like an hour and neither of us can remember what we were supposed to do. In that moment that we walked through the front doors I rememberd hearing something about checking in at emergency, or was it the main registration desk, or were we supposed to go straight to the ward?? ARGGHHH!!!! I can't remember and I can't think. SOMEONE GET THIS BABY OUT OF ME!!!

I couldn't fathom the thought of having to sit at the desk and check in so we went straight to the ward and they got us right into a delivery room. Greg had to go down to the registration desk and check me in, move the truck from the unloading zone and bring up my bags.

It's about 2:30 now and we are "settled in" and labor is moving ahead full-tilt. I was dehydrated, protein levels were rising in my urine, white counts were high but the midwife was determined to keep me from having to be attached to an iv. I didn't want to be attached to any wires or monitors on a constant basis. Laying down on my back was the most painful place to be so I wanted to avoid it at all costs!

I had decided later on in my pregnancy that I wanted to go med-free. I wasn't trying to be a hero but I knew that I don't react well to pain medications and thought that if I could avoid them I would feel better after she was born. I had also heard horror stories of epidurals slowing down labor and I did not want that to happen!

I will spare you the gruesome details, but after a quick and painful labor (insert shudder here), Madison Elizabeth Lawrence was born at 6:58pm on February 10th. The instant after she was born was the most amazing feeling! It wasn't like on TV when they announce it's a girl, so after a few minutes I finally asked someone what we had! "It's a girl!" someone finally proclaimed!

I didn't see the lesion on her back so I was blissfully unaware that there was anything wrong. At one point they turned her over and we all saw the opening on her back. It was flat and looked like her skin hadn't closed up all the way over her lower back, right abover her tailbone. At first I naively thought it was cosmetic and that it would either grow over or worst case scenario, she might need a skin graft to cover it up. I never dreamed that it would be Spina Bifida, those two words were not part of my vocabulary.

The pediatrician Dr. Addai, was called to the hospital and after having a look he started saying it might be spina bifida. We were noticing that she wasn't moving her legs properly like a baby should, there was definitely some weakness. Otherwise, she looked so perfect and she was trying to crawl off her little bed, it was hard to believe anything was wrong with her and that it was as serious as it was.

The next little while is a blur but I will try and remember what happened to the best I can remember. Madison was taken to the nursery while Dr. Addai looked her over back and decided what to do next. At one point he came back to the delivery room and started talking about how it looked like Spina Bifida and that she would need to be transported. I think he asked if we would prefer to go to Regina, Saskatoon or the Children's Hospital in Calgary. How did we know what the right answer was! After considering that we would likely need to drive while she was flown, we decided that Saskatoon would be the best option. Dr. Addai got in touch with the NICU, was connected with the pediatric neurosurgon, Dr. Vitali, and then wheels were in motion.

She would need to have surgery to close up her back within 48 hours, so the initial plan was that the Air Ambulance would come that night. What we didn't realise though was that while we had been in the hospital all day, there had been a storm going on outside, the highways were closed and the air strip was not in condition for any planes to land. We would stay the night in Swift Current and then fly to Saskatoon in the morning.

That night, my mom and dad came to bring us some food and stayed with us while we made arrangements for the next day. Once everything was set, we settled in and tried to get some sleep. Madison stayed in the room with us initially. She had a bandage on her back and the nurses had to come regularily to moisten the bandage with saline so that the opening didn't dry up. We didn't have luck nursing at first and she wouldn't settle at all so eventually the nurse came in and told us that we needed to get sleep so she was taking Madison. They fed her some formula and made her a little soother from a bottle nipple stuffed with cotton then sealed, and she settled right down and went to sleep.

Back in bed in the delivery room, I was busy searching Dr. Google finding out about Spina Bifida, which turned out to be a big mistake. I found information that was extremely unsettling, of course all worst case scenarios. Luckily we managed to get a little bit of sleep though as we were going to need it! The rollercoaster was just getting going.

February SB Clinic

February 1st, we loaded up bright and early to head to Saskatoon for our first SB clinic in 5 months! We were supposed to go in December, but several of the doctors had to cancel, and then the same thing happened in January. So February it was. I've been really anxious about this clinic mostly because Madison was supposed to try out a standing frame, and also because I was really excited for all of Madison's doctors to see how awesome she has been doing!

Once we arrived in Saskatoon our first stop was RUH for X-rays and bloodwork. Every time I go there, all I think of is how excited I will be when the Children's Hospital is built. And that cannot come soon enough. We know that we are going to have to continue to visit this hospital, but I will not be sad when we can finally end our relationship with RUH. Luckily, though there were no line-ups in X-ray or the lab so we didn't have to spend a whole lot of time there. Once we were done with Maddi's tests, we went to the NICU to visit Doreen. I'm not sure of her official title but she is a nurse who looks after the families of the babies in the NICU. She was so nice to us, brought us information on Spina Bifida and really helped us to get through that rough time. We were very thankful that we were able to see her that day as she informed us that she would be retiring in a month!

We left RUH and headed towards the Kinsmen Children's Centre. Once there we learned that Maddi's physiotherapist Kathy was away sick. No chance to try out a standing frame. Here's a rundown of the doctor's and therapists reports:

The clinic nurse - Madison weighed in at a whopping 28lbs 6oz. 99th percentile...yikes. Her length was 30.5 inches which is 97th percentile. She is a big girl. I had kind of hoped she might not have been that high on the charts as we have cut back on her formula intake and we don't really feed her any bad food. She mostly eats meats, fruits and vegetables with a tiny bit of carbs in her diet. Lynn, the nurse, told us that this is common and that once we get her in the standing frame, and then eventually walking, she will shed some of that weight. Here's hoping she's right!

Occupational Therapy (with a quick visit from a different physiotherapist) - Madison is right on track and doing everything she should be in terms of how she is playing. She's fitting shapes into holes, exploring cause and effects, loves putting things in and taking things out of containers, and is extremely curious about the world around here. (Proud Mom's note - I swear she is going to be an engineer because she is always looking at and analyzing how things work!)

Urologist - I was a little scared for this one as I had catheterized her a few times before we went and the results were higher than they should be. But, thankfully Dr. Weckworth was happy with everything and said we don't need to start cathing her yet. Her renal ultrasound was fine and everything looked good. He did explain that likely when we get to the point where we are looking to get her out of diapers is when we will need to start catheterizing her. So good news for now, but we still need to watch her for urinary tract infections, and any signs that she isn't peeing as she should.

Neurosurgeon - I have been so relieved that Maddi hasn't needed a shunt that I was actually excited to see Dr. Vitale and show off how she has beat the odds. Something like 90% of people with Spina Bifida have shunts! This is like winning the lottery. Although, I was starting to feel less worried about hydrocephalus because I had learned about the procedure called the ETV. This is where they create a new pathway for fluid to be released from the ventricles in the brain when the original pathway has been blocked. From what I read, this procedure is not effective in infants, but as kids hit 1 year and beyond, it becomes a more viable option. It is succesful 75% of the time, allowing kids to avoid having a shunt. The issues was that it seemed to be a relatively new thing that was not done by very many doctors. I had thought that if it came to this we would be packing up and heading to Philadelphia as there is a neurosurgon there that does it. Well, imagine my surprise when I learn from Madison's neurosurgon that he does the ETV!!! It was such a relief to know that if it came to this, we could get it done locally. Although, he did tell us that only 10-20% of patients are candidates for it. Chances are she won't need it though because he gave her a 98% chance of never needing developing hydrocephalus now that she has made it this long without it!!

Pediatrician - This was the first time we saw a pediatrician at the clinic and basically the whole appointment was us recounting our story and answering the same questions for the millionth time.

Dr. Dzus, Madison's Orthopedic Surgeon, was not able to make it but she was going to look at Maddi's hip x-ray and determine the severity of her hip displaysia. Let's all hope it looks good because otherwise she won't be ready to use the standing frame. She did get measured for it though as it will be built at the Abilities Centre in Saskatoon.

That basically sums up out experience there. It was a long day for all of us. Madison wouldn't nap at all but I was able to catch a 10 minute power nap while we were waiting at the clinic:)

When we were on our way home I mentioned to Greg that it seems like a waste to drive all that way and not learn anything new and just have everyone say she's fine. He brought me back to reality when he replied that it was better than having to drive up and hear bad news. Which was so true. We are so lucky that all has been well and there are currently no concerns. I have read so many stories about babies with Spina Bifida and know that we could be in a much worse situation than we are. Driving to Saskatoon for that reassurance isn't such a big deal.

All in all, a good day full of good reports on Madison's progress. We already know she's perfect but it's great when we hear all her doctors tell us that too!

The Girl Loves an Audience!

Happy New Year everyone! This year has had a busy kick-off so far. Allow me to bring you up to speed...

In preparation for going back to work we took Madison for some visits to the daycare she is attending. For the first one I stayed along with her, but for the second I left her with her one-on-one caregiver Jen and went to hang out up in the daycare staff room. For an hour and a half I worked on all the paperwork that one must complete when your child is attending a provincially licensed daycare (and I didn't get it all finished either!). She got along wonderfully without me by her side, no issues at all! We did one last test when I dropped her off for a full morning, and as we expected, she did fine then too!

Last week I started back to work so Maddi has been to daycare for three full days which all went well! She hasn't quite got used to a napping routine there yet but I am sure that will happen soon. She seems to love playing with all the kids and she doesn't even notice when I leaver her! On Tuesday this week Maddi's PT Michelle will be making a visit to the daycare to work with her one-on-one caregiver Jen and teach her about the therapy Maddi needs on a daily basis, and how to help her play and move so that she continues to develop as she should and doesn't compensate for her deficiencies in mobility in ways that will be harming.

Aside from daycare, mom and I took Madison to Saskatoon last Monday to see an Opthamologist. I had noticed since she was born that she seemed to have one eye that turned in. Her pediatrician noticed it as well and felt that it should be looked at. Thankfully though, in the time that passed since he made the referral several months ago, the problem seemed to have corrected itself. The Opthamologist did not notice that anything was wrong so that was a relief. The only downside to the day was that for two and a half hours we were "forgotten" in the waiting room. Maddi was a trooper though and was able to make the time pass by making everyone smile. At one point after we had been there almost two hours already, she was looking around at the people sitting by us and as soon as one would look at her she'd smile then look at the next person until they looked at her and so on. Then she started to tell everyone stories that must have been pretty funny because she would laugh and laugh, and then proceed to smile at everyone again. It was pretty entertaining!

While in Saskatoon we also made a stop at the Sk Abilities Council to get some adjustments to Maddi's AFOs (Ankle foot orthotics), and also at the KCC (Kinsmen Children's Centre). Since it wasn't a regular clinic day at KCC, we just had a little chat with the nurse coordinator to discuss a few questions I had, and then the PT Maddi sees up there had a look at her AFOs since having the adjustments. We also discussed standing frames and it was confirmed that Maddi would have a hip x-ray before her next Spina Bifida clinic on Feb 1 and if her Orthopedic Specialist is happy with how her hips look, she will order the standing frame so that we can get started in it right away!

This is truly exciting news. It seems like Maddi is hitting all of the developmental milestones, except being able to bear weight on her legs. This will be a huge step and is really the only way we can get her legs strengthened and ready to stand on her own. I am sooo very excited for her to experience the new perspective her stander will give her. She will finally be able to see eye-to-eye with her peers who for the most part have been standing for months. I am also relieved that she will start making progress again in terms of her development. I feel like things have been at a stand still for the past few months. She has really mastered the army crawl and rolling around to get to where she needs to go. I am ready to see more though and she is ready for a new challenge!

That's kind of where we are at now. Within the next 30 days Maddi will have another renal ultrasound, bloodwork, a hip x-ray, a trip to the Spina Bifida Clinic where she will see 8 different medical professionals from various disciplines, two visits at the daycare from her local PT Michelle, one year check ups with her pediatrician and her family doctor, and also her one year shots. Wow! We are going to be busy. With me being back to work I had to reassure my boss that it won't always be quite this crazy. Everything just seemed to land all at once!

I leave you now with some photos we took at Christmas:

Maddi with her cousin Preston on Christmas Eve. I tried so hard to get a good picture. I need to work on my camera skills! Luckily I received a new lens for Christmas so that will help!

Madison on Christmas morning:

I can't help but laugh when I look at this picture. For some reason she made this face non-stop for a couple of weeks around Christmas time!

Update

It's been a while since I've really had anything to post! We have been busy and my maternity leave is quickly coming to an end. So here's the latest update on Maddi:

-She continues to be a little rock star! She is rolling all over the place and getting stronger every day. She can also pull herself around the floor with her little army crawl!

-Maddi is still not able to bear any weight on her legs, but we received word that she will get a standing frame the next time we go to her Spinal Cord Clinic in Saskatoon. This will be the start of strengthening her legs so that she can eventually stand on her own! We had hoped to start this process in early December but she will need to be seen by her Orthopedic surgeon first so that she can verfiy that her hips are ready for this. Maddi has something called hip dysplasia which means that her hips will dislocate. It wasn't extreme enough that they wanted to do any bracing for this, but it will still be a bit of an issue moving forward. So for now we wait, and look forward to seeing Maddi in her stander in February!

-I go back to work January 11th and Madison will go to the Natural Wonder Early Learning Centre. She is such a social little baby, I think this will be a great place for her. Luckily there is funding that will pay for a one-on-one teacher for Maddi. We are very excited that a young woman who has worked at the centre for 8 years has asked to work with Maddi. She has 3 kids of her own and is a very nice, caring woman. Maddi will be in good hands! Luckily Maddi's physiotherapist will see Maddi right at the centre. She will also work with Maddi's teacher to train her on what type of excersizes and therapy she can do for Maddi on a daily basis. The one drawback to the daycare centre is that it's not wheelchair accessible, not in the slightest. They will be building a new centre though, opening around 50 new spots in a facility attached to the new elementary schools being built by the hospital. Thankfully it will be fully wheelchair accessible, as will the school! Maddi will go to that new school anyways so this will work out well!

-We are going to see an Opthamologist in Saskatoon in January. Madison seems to have a touch of strabismus so we are taking her to get it checked out. This is common with kiddos with SB so it's not a huge surprise. She may need glasses or some patching to help strengthen her eye muscles, or it may be nothing. We are glad to be getting it checked out though!

What about mom and dad:

-Greg and I were in Vegas last week and had an awesome holiday! We travelled there with Greg's sister Debbie and her husband Dave and together we took in some of the sights and sounds of Vegas. Oh, and we might have done a bit of shopping. Luckily Westjet didn't charge me for a 76lb suitcase. I'm not even sure how it's possible to fill a suitcase to be that heavy. Especially considering it was stuffed on the way down and weighed around 47lbs!!

I think that just about covers it for now! Sorry it's not a very exciting update but around here that could be a good thing as it means that Maddi is doing well and kicking Spina Bifida's butt!

Merry Christmas to all!

Love Meaghan, Greg and Madison