Spina Bifida Clinic

It was time for spina bifida clinic again!

Nick got to show off his crutches skills!
And of course impressed everyone!

Clinic Day is usally a long day, and so we came prepared to spend the day in the waiting room. But we actually spent most of the day in an exam room. So we could spread out our stuff.

We saw physiotherapy, who was very impressed with his walking. And orthopedics. He got the all clear for scoliosis. Nick has had a bump at the bottom of his cyst scar, I find it there sometimes and then not there at other times. I asked if I should be concerned from an orthopedic standpoint. But he didn't think so.

We saw occupational therapy. I had some questions about Nick's wheelchair, and the possibility of how to look at getting the FreeWheel. There isn't any funding for it anymore. So we'll keep that in mind when we are looking to buy it. She had some suggestions for the wheelchair, but we will follow up on them with Grandview OT. We also talked about Nick's computer and some suggestions for programs to help with typing.

One of the things with the SB clinic, is that you get to see everyone, but you need to also figure out who to talk to, to get some answers. Or at least know that you are on the right path.


When we met with urology we talked a lot about what we have been doing. After Nick's spinal surgery the urology issues we were having improved. Botox right now is another option, but not something we want to explore right now.
But the thing that got me excited was that I FINALLY had someone to recommend and actually suggest putting the PEG in our solution at night! I have asked this many times and have been told no.

We also met with Dr Church. She is my favorite doctor! Not only is she passionate about caring for Nickolas, but she listens and respects me. Both as a mother, an expect and a nurse. In fact, she sent her residents out of the room at the end of our assessment so that we could chat.

During our appointment we talked about Nick's overall health. She asked about school and Nick's IEP, I said that seems very basic to me, and I'm not sure what to do about it. I never even thought about his IEP or I would have brought a copy with me.

So I'm getting a copy of Nick's psycho-education assessment and his IEP to see if there are areas that we are missing that we can help assist him in his learning.

Overall it was a good day. Nick is 114.6cm, which is 17%ile, and his weight is 22.5kg, which is 42%ile. So he is shorter, but we know that this is most likely, and his weight is ok, if a little under but not concerning.

We go again in a year, but everything is looking good and stable.

Clinic

We are starting to get into our clinic-heavy time of the year.

Our spina bifida clinic has been divided up into individual appointments, which makes a very long day into 2 long afternoons (which are on a Friday of course).

We had our appointment with Dr Church, Nick's developmental pediatrician the first week. It went well, he is doing great (of course). We talked about Nick's MACE, which is working well, and his bladder leaking, but our urology appointment was the following week. Dr Church (who we love, and who also has spina bifida) says that since we have bowel continence, we should try what we can for urinary continence. We are close, but not there yet.

We talked about the increased bracing, which we will follow up with, with orthopedics in the fall and neurosurgery next month.

We talked about Nick's diet and fluid intake, skin integrity and any other concerns. Nick has been getting so much better with drinking water, which has helped with the overheating he used to get (and switching from oral ditropan) Nick got to steal some of my iced cap after drinking his water.

We also talked about self care and independence. At 5, almost 6 Dr Church felt that he was old enough, with enough dexterity to learn how to self-cath. So that is our goal to be ready for the start of school. Nick was very receptive to the idea and solemnly told her that he would learn. My concern was about bladder infections. But she said that we can tolerate a couple of infections for him to get his independence (and we haven't had a UTI in a long time)

That was one appointment down. Everything is good.

I wasn't able to go to the next one, the urology appointment, but Kyle was there and I gave him a list of stuff that I wanted him to ask. To get that bladder leaking figured out. Botox is on the top of my list, or maybe increasing the gelnique?

So Kyle went with Nick and we came out with a plan. The 2 treatment options involve general anesthetic. Which is more invasive than I thought it would be. The options are putting in a bulking agent, to bulk up the ureter so it doesn't leak or botox that will relax the bladder to keep it from spasming.
Both are options that do different things for the same symptom.
The other option that we have is do some tests to see why we are still getting leaking. This, of course is what we want to do. Why treat blindly when we can try to determine what the best action is.
So in the fall we are going to do a VCUG and urodynamics study and then come up with a plan after that.

We also asked about increasing the gelnique (which is a bladder relaxant) but urology said that he was at the upper end of the dosage. So that's not an option.

I'm hoping we can have the tests scheduled in September so that we can get our plan in place. And then the last part of our clinic in the fall.

Writing and Education

We've had the finale of our appointments from last month. We had psycho-education testing 

Psycho-education testing and writing aids.

The writing aids appointment is with an occupational therapist. We brought some writing samples and times with us. She did some testing to see how Nick was typing and his typing speed to be able to compare it.

In the end we got to take home a computer that is similar to his computer at school. We want to practice daily and use sight words and practice typing.

Nick has an hour of time in the evening that is perfect to set up the computer and let Nick type.

This is an example of what Nick has typed

Nick spends some time looking for the letters, but he is liking doing typing and is motivated.

The key to everything involved with Nickolas is motivation.
Nick has to want to type and write. And even if it took 45 minutes to get that sentence and words out, he still did it. And was so proud of himself!

Pool Party Reunion

We had a Spina Bifida Family Reunion!

Our group of families who originally met when our kids were itzy-bitzy and we were all just learning about spina bifida. We started going when Nick was 4 months old and went until they cancelled it 2 years later.

After the program was cancelled I created a FB group to try to keep us in contact at least (and the group has grown to include anyone in Ontario called Our Lives, with Spina Bifida in Ontario)

Of course it isn't all about our kids who were born with spina bifida, it's the siblings too.

And the adults.
Katheryn wanted to get a picture of everyone taking a picture of them!

Afterwards everyone was in the pool!

I can't rave about these puddle jumper floaties enough. Nick just loved swimming around everywhere.

Katheryn wore her floaties as well (she doesn't really need them) her swimming is great, she just needs to increase her confidence with the swimming.
She did show off her cannon balls!

They had a fantastic time in the pool, and playing on the 'boat'

Here are all the kids together, and the siblings were around in the pool

Nick's MACE was fine in the water. I didn't cover it, and he showed it off to everyone. 

They weren't that happy when it was out of the pool

We all had a great time catching up and seeing how everyone kids are growing up.
The adults had time to catch up and talk about everyone's new adventure (mainly starting school) and everyone wanted to hear about Nick's MACE and how it was going.

It was great gettting together with everyone, we definitely need to do it again! It's great for the kids to be around other kids just like them... our kids with spina bifida and the siblings. When I talked to the kids about the party I stressed that it was for both of them!

Thanks to Chris and Meredith for hosting! And making all of that fantastic food!

Spina Bifida Clinic - Carry On

We had our spina bifida clinic this week.

It has been almost 14 months since our last full appointment, and even though most things have stayed stable and relatively in control, I still was ready for this appointment. I had a couple of focuses - school and poop. And we had a whole group of families who were going to be able to meet up at lunch!

Nick got his game face on!

We had him walking around in his walker the entire time. Showing off to everyone who got to see him grow up until our baby group ended in last spring.
I had some things that I wanted to focus on.

Number 1 - I want a bowel routine. (Skip ahead to Number 2 if you don't want to talk poop). Something effective, something that will help us get out of diapers. Something that is not suppositories (which we have been trying for the last year). I have been trying to get a routine for almost a year! I talked about it in this post last May. And we have (knock on wood) solved our constipation problems and want to work on our clean-out issues.
The advice that we got was to continue with the suppositories, that it will take weeks to get results. To be consistent. To time things appropriately (sit on the toilet 20 minutes after eating, knees elevated).
We have been doing this. For a year. OK so we haven't been that consistent in the last couple of months, because it seems to be messier for the day after we do this, because it seems to work well for consistency but not for routine.
And even though I trust our nurse Julia and value her expertise and opinion, I also trust my own instincts and believe that we are past this point and should be trying something new.

Number 2 - I want to be as ready for school as we can be. And I talked about my concerns. A lot.
We talked about how far he has come in the last year. I sometimes forget that 18 months ago he wasn't talking at all. And now he talks as well as Katheryn.
But I'm worried about his learning. I am always aware that spina bifida makes him more likely to have learning difficulties (but I'm not sure what that looks like yet). And I'm worried that some of the things that I'm seeing now with his learning are more spina bifida/hydrocephalus related and less 3 year old/boy related.
Specifically that he is counting, counting numbers and counting things (to about 15 - which he has been doing for a while) but he isn't able to recognize numbers, or letters. We've been working on it, but he isn't showing any progress with recognizing numbers or letters.
I'm not sure if it is how I am approaching it - "Nick what letter is this" and he freezes. Or that he just isn't getting it. I've started pretty simple. When he does reply he usually says "A" or "4" for almost everything. Or just doesn't say anything at all.

We talked with the clinic psychologist as well, about school needs and expectations. But at the moment we still don't know what school we will be going to (but since we haven't heard and it is April, we are hoping that means yes to Campbell's). So we will follow up with her in the summer some time.

Number 3 - I wanted the opinion from physiotherapy about forearm crutches. Pretty much she blasted that idea out of the water. (This is the same physiotherapist that told us that Nickolas functioned at the L3 level, which I have never believed.) And it is not the physiotherapist that we have seen primarily at Bloorview, so I'm not actually confident that she is aware of Nickolas' potential. So I won't always agree with her opinion, but still listen to what she has to say.
Kyle and I have been thinking of fore-arm crutches for Nick, to make something that going around the classroom easier and less bulky than the walker. And last summer he was doing so great with the canes that I have been looking on and off for some canes for us to purchase. But somewhere along the way the idea of the forearm crutches came up.
After we got over the initial strongly negative reaction to discussing crutches, I actually heard what she was saying. The base of a crutch is one point, whereas the base of the cane (quad cane) is 4 points and a stronger base. But he has to have pretty good balance for it to be effective for mobility. Right now his walker gives him the ability to stop and rest when needed, and this isn't there for canes. He must be stronger and more solid to use something that is not the walker.

We went through all of this before lunch.

And lunch was a very important event for us.
Because we had a date.
Through the facebook group we discovered that 4 of us families were all going to be a Bloorview for clinic on the same day. So we all exchanged numbers so that we could connect. There was actually a whole lot of people that we knew that day. Unfortunately our times didn't meet up with Stefanie and her son, but we did get to have lunch with little Alejandra and mom, and also meet a little girl who I knew before she was even born, and her parents! Another family who I have talked to online was also there to meet for the first time in person.
This was our lunch group:
Josh, Amberly and Claire, Antonella and Alejandra, Nick, me, and Kyle - and in the corner (no realizing she was in the picture) is Shauna, who tries to be at all of clinic groups. As a representative of SB&H.

We hurried through lunch, to wait and wait and wait in the waiting room for our afternoon appointments. During this time we got to connect with some other families we knew from baby group. And see how much everyone has changed!
Nick had a lot of fun playing with another little girl on the carpet. They were chasing each other around, she is walking but spent a lot of time crawling on the floor with Nick as well which he really liked!
Nick gave up on his walker to crawl around on the floor. Or what he is doing in this picture - which is raising up on his knees. He has been spontaneously doing this for a couple of weeks, getting stronger and stronger! (And higher than in this picture)

The end of the day was spent with the docs. They didn't tell us anything that we didn't already know. Orthodically he is great. (I can a concern about his legs bowing a bit, but the bone doc said it wasn't anything to worry about - so I won't).
Urologically we got a lot of information from a surgeon. Because that is what he is. He spent the entire time talking about the MACE surgery versus a caecostomy button and explaining the 2 different procedures.

This is a surgical procedure that gives us (and in the future Nick) the ability to clean out the colon from the top down (antegrade enema). So that enema solution can go in the top of the colon through a stoma (hole) from the outside of the body to the inside. It is supposed to be a very effective way to achieve social continence and is more effective than the bottom up (retrograde enema) approach of regular enemas. 
There are 2 different ways to do this, 2 different types of surgeries. Including a simple radiology procedure to put in a tube from the outside to the colon (like a g-tube) - the caecostomy. Or a laproscopic surgery to use the appendix to make a natural tube from the belly button to the colon  - the MACE.

It gave both of us an opportunity to ask questions, get answers. I have looked extensively into these surgeries and made my decision of what I would want (MACE) but Kyle hasn't. And while the doctor said we could do this at any age, I'm not ready to put my son under the knife until I am confident that we have tried every other option there is out there. It also gives us an idea of the procedure to follow once we make the decision that it is time. In my mind I'm thinking 6 or 7. But the idea of an elective surgery for my child still makes me a little sick.

So that was our clinic visit in a nut-shell (like a coco-nut). I hadn't expected to write so much.
Clinic didn't have any big news, it was pretty low key. It mainly reinforced things that I already had in mind and gave us a plan.
Good thing nothing major happened, because this visit actually fell on Katheryn's birthday. And our day was jam-packed full of birthday-traffic-clinic-traffic-birthday-dinner-sleep.

Hopefully we will have an uneventful (but community filled) clinic visit every year!

The end... change is good... righ?!

2 years of going to every SB mom and baby group. Seeing Nickolas going from being the youngest, the smallest to being one of the oldest. Following how other kids Nick's age (Natalie is a month older)

And it ended this week

We had a little party and spent some time just talking.
Talking about how we wanted to continue and what we could do.

And we eventually got our acts together and took some pictures.

It was a sad day for everyone
But Nick was just really happy that there was some watermelon!

This is some of the parents, kids, staff and volunteers.
Our last baby group.

I am going with the idea that this is a good change.

This will provide us parents with the opportunity to direct our group, to maybe reach people who were unable to attend group but were still interested in the support.

We have a couple of ideas and tricks up our sleeve, and hope we can start in September with some kind of plan about how we will be able to expand our changed group and have what we need.

A couple of us have our feelers our to the SBHAO to become a more official parent group, using the facilities and faculties of Holland Bloorview as a resource.

I also went home and great a facebook group to get us started as a place to 'meet' and plan hopefully together.

I was trying to come up with a name for the group.

What I came up with was Our Kids, with spina bifida - Toronto and area.

Because first and foremost they are our kids. And yes they have spina bifida, but they are kids first, and we are parents first.

I'm hoping that this will allow us all to connect with people that receive services at Holland Bloorview that we just didn't know was out there.

I am not sure how the link will work. But if you are reading this and you think hey! We go to Holland Bloorview for services! Then contact me on facebook and we'd love for you to join our group. I say it is for parents, but really we won't deny anyone who is interested. 

The Letter

After I wrote last week about the end of our spina bifida group and posted it on my facebook (what I do for some of my better posts). I was contacted by someone from media relations at Grandview Children's Centre. She offered support, if possible, but also presented me with an oppurtunity to have a voice.
I have not been the kindest with my feelings about the care we have received from Grandview. Especially when I was furious when we lost our physiotherapy at the beginning of 2011.
But talking back and forth I have agreed to do a 20 minute presentation to the Board of Trustees at a Grandview  meeting in September. To talk about our experiences, triumphs and difficulties. It is called Voice of a Parent.
I can't wait!

But I started of my blog to post my letter.
This letter is what I am sending to the manager of the spina bifida and spinal cord injury department, as well as a couple of other people at Bloorview. (What is it with all of these -view names?!). I am also planning to email it to our team at our spina bifida group.
I hope the letter is compelling.

›š

May 12, 2012
To whom it may concern,

I am writing to tell you about a wonderful program at the Holland Bloorview Children’s Rehabilitation Spina Bifida program. To relate to you our experience with the Spina Bifida Parent-Child group that runs the first Thursday of every month. I want to tell you how this unique and valuable program has changed our lives (which we were notified of last week). I want to implore you to reconsider the permanent cancellation of this program. I would like to work together to problem solve ways to keep this program running to benefit my own family, but also other families following us, who are affected by spina bifida.

My son, Nickolas was born November 2009 with spina bifida and hydrocephalus. We first started attending Holland Bloorview when Nickolas was 3 months old. For more than 2 years we have been making the trek to Holland Bloorview every month for spina bifida group (taking the summer off). We only missed one group when Nickolas was hospitalized.

Spina bifida group is a group for children who have spina bifida and their caregivers to attend a 2 hour session each month. The session begins with a 1 hour opportunity for team members to assess and discuss current progress, the second hour allows caregivers/parents to have an education session with one of our team members, and also have the opportunity to talk as adults amongst ourselves. It is amazing how much 2 hours a month has had on our journey with spina bifida.

My first concern when we were told about the cancellation of our spina bifida group is the loss of social support that I get from meeting with other parents who have been there, and are still here. It is the parents who know the terminology, they have received the same words, been offered the same choices, have waited the same wait, and hope the same hope. There is nothing to compare sitting down every month with families who just understand. I belong to a number of online communities and forums but it doesn’t compare to actually sitting in the same room with someone.

 Last week when we were told by management that our group was going to be cancelled we discussed ways to continue this aspect of group through a support group. Parent mentorship was mentioned, but it is the group aspect not one on one that was important to me. As a parent I find that a support group is such an important part of keeping myself connected. But as a parent of a child who has special needs it is hard for me to do things solely for myself. I don’t know if I can make the same commitment to go to a support group that I can to go to spina bifida group. Because spina bifida group is much more than just parent support.


Nickolas would not be where he is today without our spina bifida group.

This is the place where we have monthly face-to-face contact with our professional team. It is in a safe, leisurely environment that Nickolas trusts. It allows myself, as a parent, to ask questions and voice concerns in an atmosphere that does not have a time limit.

It is an environment that provides an opportunity for rapport and a relationship. This is truly where my parent-professional relationship flourishes and where Nickolas’ client-professional relationship has started. This is a relationship that has slowly developed over time as Nickolas has started to trust his team. This is something just isn’t possible in an appointment time in a clinic room every 6-9 months. I am terrified to lose this relationship and the trust that Nickolas has built with his spina bifida team.

This group provides the opportunity for Nickolas to be seen and where I could go with questions on concerns between treatment. The team is who I went to while we were on a one year PT/OT waiting list at our local centre, Grandview Children’s Centre; and again when we were on a 6 month wait list last year. They are the ones who addressed my worries that Nickolas was losing valuable therapy time and opportunity.

I did not realize that Nickolas had outgrown his first pair of AFO’s until Kim, our physiotherapist, at spina bifida group noticed. I have been worried about different bruises and red marks on Nick’s feet and have been able to get Julia, our nurse, to look at it after we have seen orthotics.

The idea that Nickolas could benefit from a wheelchair was first brought up in spina bifida group. Both Kim and Beth, our occupational therapist, noticed how Nickolas was outgrowing his stroller. And I was prepared for my child to be in a wheelchair after an education session earlier in the year. The idea had never even crossed my mind. And the wheelchair has given Nickolas his independence in a way I never would have imagined. We would not have this without our spina bifida group . There just isn’t the time allowance, relationship or subsequent realization, in a clinic that is 6-12 months apart.

Spina bifida group has also been an outlet for Nickolas (and me) to try different assistance devices that I didn’t realize was needed. From the corner chair to castor cart and different walker options – posterior, anterior, cart etc.

Nickolas was struggling with his speech last year, and I knew that the spina bifida group was a place to strategize with Sukaina, our speech-language therapist. I was encouraged and hopeful that we would eventually get there. And when Nickolas started talking – we could celebrate together.

When Nickolas was starting solids I had the opportunity to discuss this with Julia, our nurse. When constipation subsequently started I felt comfortable to email Julia, right before a long weekend, with my concerns. This relationship started in our spina bifida group. When a similar situation occurred this past winter we had face to face, personal contact to problem solve together. This spring we are working on bowel management and Julia’s input and problem solving has been invaluable. When issues come up, I know that I’ll have the opportunity to ask questions and deal with concerns, in person, at least once a month

 I strongly believe that Nickolas is where he is, and doing so well because of the time, relationship and assessment that we have gained with our spina bifida group.

The education component is helpful, but it becomes repetitive after a while. But as a new mom it provided a lot of helpful knowledge. It has given us an opportunity to be presented with knowledge and information in a group setting that is specific for the needs of my own child. It has also provided a chance for my spouse to come and learn and ask questions. This is not possible during clinic. Online or paper education modules are already available if you know where to look. But it does not compare to personal education about someone who knows your child and can teach what you want to know.

I think that losing this educational aspect of group would be disadvantageous to families who are following us in our spina bifida journey. The knowledge I’ve gained has helped me to feel more confident with different aspects of spina bifida. It has also given me an understanding of what questions or concerns to address during our clinic visits.

I implore you to reconsider the cancellation of this spina bifida group. I believe that it is necessary for the continuing care and future abilities of my son. It has provided us with a family-centered partnership. I am terrified about the detrimental effect on our lives and abilities with spina bifida after the permanent disbandment of this spina bifida group.

I was looking forward to continuing group for one more year before the beginning the next step of our child as Nickolas enters the school system. I was anxious for the knowledge, experience and support that this monthly group provides when it is time to make this transition.

I have a regular blog in which I discuss our journey with spina bifida. I have discussed the impact that spina bifida group has in our lives on my blog, as well as writing about my initial worries and fears and experiences after learning that the spina bifida group is being dissolved. I encourage you to visit my blog to read about our experiences and link into specific experiences in which spina bifida group has positively impacted our lives. http://www.riddingfamily.blogspot.ca/2012/05/end.html

I ask for time and opportunity to problem solve to maintain this service which is so essential for our care. If parental input is needed before such a drastic change in our care I’d like to offer to work together to come up with a positive plan that will not have such an impact on my child.

I have some ideas that I would be willing to discuss further including meeting every other month, decreasing times between clinics (i.e. every 3 months instead of every 6-12 months) this would allow the support component and the relationship to continue to flourish. Fundraising for a financial need, contacting the SBHAO to assist in problem solving, setting up a supplementary support group through the mentorship program. I know there are other ideas out there and would propose a focus group with other parents and management to attempt to explore other opportunities.

Thank you for your consideration,

Amanda Ridding

Mother to Nickolas Ridding

Spina Bifida Clinic - part 1

We had our spina bifida clinic on Friday. This is part of our crazy, crazy, super crazy month of July! It happens every 3-6 months or so, when we cluster all of our appointments. So for a couple months we seem to live in the hospital or clinic.
Nick is happy to just sit in the waiting room chairs like a big boy!
Get used to it baby boy!

And we brought lots of things to do! And tried to keep things a little fun while we waited...

and waited....

and waited!
I think the waiting may have turned Nick a little goofy!

Nick totally rocked the developmental pediatrician!
Lots of smiling and interaction, even a couple of babbling words. And waving good-bye (once she left the room). And we have some goals to work on more words. She suggested we try animal sounds! Sort of like cheating at making words!

This is Doctor Church with the spina bifida clinic at Holland Bloorview. Not only is she easy to talk to, friendly and great with the kids! But she has spina bifida herself! How cool is that?!!!

We made it through pediatrics, kidney ultrasound and tried to fit a quick trip to orthodics before urology.

Then it's back to more waiting. And fooling around!

And trying to sleep - mainly because Nick doesn't like to nap when we are out. He didn't actually sleep. More like lay his head down, and then pop it back up and ready to go!

That's not working! So let's try to escape!

And pull out the bottom of my distraction activities! 2 new books!

And we'll round it out with some standing!

Nick's newest favorite word - uhoh! That's a word right?

Nick had the opposite of white-coat syndrome with the urology resident. Every time she left the room (to get an answer for a question I asked her) Nick wanted her back! Poor resident was asked about starting a bowel routine, increasing ditropan, changing the mode of delivery (what about right into the bladder?) and a prescription for the UTI.

Then she said she was going to come back so we could problem solve why he got a UTI. What?! What is there to problem solve. He is cathed regularly for the last 20 months, he's had 1 UTI (without fever or crankiness) I'm pretty happy with that.

Over all, Nick checked out well for everything. We got some antibiotics (finally) for a UTI Nick has been fighting since last week! Not happy with my home pediatricians response time to that one! AND I signed our family up for another research study. (Ask me to participate in research and I'll jump at it!) I have to read it over, but I'll blog about it later (it is for the drug company for birth control to add folic acid, and the experiences of living with a child with spina bifida).

One thing that I like about the clinic is the ability and opportunity to chat and socialize and network with other families. Now I should add that I'm a touch social. I'm not quite sure how that happened. I used to be the shyest person.

During various waiting times I was chatting with Shauna, who is the representative for the SBHAO who tries to be at all of the clinics. Thanks to her I got to connect with 2 new families who live in Durham region by us!
She connected me to a family who lives in Bowmanville and have a 2 month old! I think I might have talked their ear off a bit!
I had also talked to Shauna about a family in Newcastle who had a HUGE SWWR walk that I was sorry that I missed. And she wrote a book that I just ordered (so excited, can't wait to get it!) It was amazing to watch her 4 year old daughter RUN with her brothers!

That's what I love about the spina bifida clinic!

Physio, physio, physio - Back to Basics

I have a feeling I’m going to have a lot to say about this in the coming weeks.

We’ve been looking at our options after being ‘dumped’ by Grandview. Yes I know that is not what actually happened. But that is how it feels, so I’m going with it.

We met with Katie, our infant development worker (who we LOVE) and she brought us information on private physio. Today we went to mom and baby group at the SB clinic at Bloorview. We have assessment by the RN/PT/OT/SLT/SW (I think those are all the letters) for an hour, then parents leave for our own private education and group. We end up socializing and talking amongst ourselves for about half the time and squeezing in some education at the end. It’s almost as if we need another hour to socialize and get to know each other. (Actually we talked today about meeting at noon for lunch and socializing before group).

At group today I had the opportunity to talk to the physio at Bloorview. We talked a little about what he was doing (because he really refused to show off anything). We talked about what went on with Grandview, and how I feel we really need to get more physio.

I left kinda feeling like we have been totally on the wrong track for the last couple of months. And I’m not sure how we got off track. OK that’s not true. I do know where we got off track. We tried to skip some steps.

So I have some goals, some plans to follow up on. We are going to work A LOT at home. A LOT more than we have been doing. Thank you Gretchen for helping me realize that we will be doing the actual doing of physio (commenting on my post when we got 'dumped'). So a break doesn’t actually mean no physio, it just means more effort on our part. As long as we have some guidance of what to do and not to do.

So our plan. Standing frame, standing frame, standing frame (I guess I just feel like repeating myself a lot today). Work on lie to sit. Consistently. As well as hands and knees, and kneeling. All of these I know Nick can do. It’s just getting him to do it more often. Also more ball work (core, core, core).

These are basic. And they’ll lead to the next steps. Stronger legs, stronger core, more confidence. So that when he’s standing at the couch, he’ll be stronger and more ready to take those steps. Because then he will have some basics behind him.

I think before we were concentrating more on the standing (which is great), but not enough on making sure he had the skills to back it up.

It reminds me a little about learning how to play piano. I took piano lessons when I was younger. I enjoyed it, mostly. But what I really wanted to do was play my Les Miserable and Phantom of the Opera. So once I took a couple of years of lessons, played lots of very basic stuff and learned how to read music. I could read the music, and could play some of the music and stopped lessons. I can play sorta well with my right hand, and only 1 or 2 songs with my left hand. I can do a couple of the songs but that is it. I am not a very good piano player. Pretty much, because I skipped a bunch of steps. The basics.

Clinic Visit

We had our second spina bifida clinic this week. I can’t believe it’s been so long since we first went to Bloorview Kids Rehab (now Holland-Bloorview), but it was only 4 months ago. It feels like we live there sometimes. I could drive there with my eyes closed! But everyone there is so focused. So great with everything. We go to Bloorview for physiotherapy weekly, and then once a month they have a mom and baby/child support group, and then our clinic visits. So we can see everyone at the same time. We only need to go downtown to Sick Kids for neurosurgery appointments and tests that can’t be done at Bloorview.

Our appointment started at 3pm, so I knew it would be a long afternoon – we got out at 7pm. We saw the developmental paediatrician – Dr Church, had a renal ultrasound – all good, and we saw urology. The urologists that we see rotate, so the one we saw in January at Sick Kids are part of the same rotation that we see at Bloorview, but so far we have seen at least 3 different doctors.

So the first thing he asks is what medication are we on. Restoralax (Miralax) is the major one – but I keep forgetting it is a medication. But also Trimethoprim, an antibiotic that we are using for a prophylaxis (to prevent infection) because we are cathing. Well it was decided to stop the antibiotic – perfect I was going to ask because he hasn’t had a UTI and I don’t want him to have too many antibiotics unless he needs it. Then the urologist wanted us to start ditropan. Ugh!

The dreaded ditropan. I’ve heard of it before – it is one of the most common medications that kids who have SB are on – second only to Miralax it seems. This medication is to relax to bladder, this prevents reflux (urine being forced back into the kidneys – not good). But wait a sec! I thought Nickolas’ bladder was relaxed – the ‘lazy’ bladder. Well no we don’t know what his bladder is like. We need further study – urodynamics (which we get done in the next month or 2).

OK so I get the reason for ditropan, and I get that it is important to prevent reflux. But I don’t want to start a medication that is unnecessary. Oh and did I mention the side effects? Constipation (give me a break!!!) and over-heating, as well as dry mouth. And he won’t pee on his own.

I’m not entirely happy with our visit – in fact in kept me up at night.
What to do?!

Mom and Baby Group!

So we went to our first mom and baby group at the spina bifida clinic at Kids Rehab. It took us about an hour to get there, an hour and a half (rush-hour) to get back. But I'll definitely go again.

There were 5 other moms there, 2 others with infants and 3 moms with toddlers. It was great to go out and be with other moms and kids with the same problems we have been facing (and will face).
The first hour was with physio, occupational therapy, nurses, volunteer and social work. It was a bit of a free for all with playing and seeing how the kids have been doing. One of the kids, 2 years old, was completely paralyzed from the waist down, and it was just amazing seeing him move around and play. He was such a happy boy. It’s wonderful the resiliency these kids have.
For the second half all the moms left to have our own meet and greet. The online forums and everything are great, but I really do like the face to face as well. When the hour was over I wish we could have stayed longer. The next clinic isn’t for another month.

I would be holding Nick and he would just be staring up at me. He did like playing with another little girl his age. Just staring - his first girlfriend. He really is a face-man. You give him a toy and he doesn’t care. You stare at him and he loves it!

Physio also gave me some more things to do with Nickolas. We are working more on tummy time. When I put him on his tummy he doesn’t like it, so I’m working more on that. He can lift his head, but he doesn’t like to. Nick can move his feet but I don’t think he feels all that much. If I hold him up with his feet on the ground he doesn’t really push against them. Sometimes he does, but I don’t think he feels it. So we are trying to teach him what his feet are, and getting him to play with his feet.

I need to take a video of Nickolas in the morning. He wakes up and talks and talks to him mobile, he also talks to the lion on the wall above his crib. About half an hour in the morning I can get out of him. This allows me to get Katheryn ready in the morning. She doesn’t like getting changed at the moment. Screaming when I take her pj's off. But once they are off and she's getting dressed ... sweet and smiling!

Did I mention Katheryn’s new favourite word - MINE!