So much has happened since our last update 6 months ago!

Porch lift

We mentioned that we had received funding for a porch lift from an accessibility focused charity organization, Access for Everyone, in our Fundraiser Thank You - Part 2 blog post. We had it delivered in our yard in the middle of June and started the steps to have it installed and also to build a new deck to accomodate it. The lift actually requires a concrete pad to be poured so we can drill supports into it for the lift platform.

We struggled with getting a contractor to actually come out and get things started or give us a complete quote. In July we finally found a local guy in our neighborhood that builds decks and had him come over to discuss our project and give us a quote. The estimate we got for the concrete pad, lift installation and building a new (tiny) deck was significantly more than we had anticipated. We’re still surprised to see the cost of services and labor in Calgary. To top off the cost being much higher, upon looking more closely at our yard, we realized that our underground utility lines were most likely running where we were planning to install the lift. We called Alberta One to have them sight our yard and they confirmed that all three services were running in that area of the yard. Which means, we can’t place anything semi-permanent or permanent on top of that location and within 1 meter on each side.

We felt crushed. We had planned everything perfectly and had found the best spot to put the lift. We had also specifically ordered a lift with that particular configuration (entrance and 90 degree right hand exit with tower on the left side). As we played Tetris in our minds, trying to figure out how else we could install the lift, we grew frustrated. Even if we made it work somehow by flipping things around and/or dealing with having the porch lift in the middle of the yard, at the end of the day, we’d be paying a fortune to get something that we weren’t happy with.

After a lot of thought and discussion, we decided to give up on the porch lift. In hindsight, we now realize that things moved too quickly. Had we known what we know now, we wouldn’t have ordered the lift. Heck, we probably wouldn’t have bought this house, as much as we like it. We’ve now decided that this house isn’t going to be long term and we’ll probably be moving next year in an effort to find a more accessible home with less headaches. As for the lift, it’s still in our back alley, but probably not for long. We’ve contacted the home pediatrics team and the charity and we’ll be donating it to another family in need.

ICU admission

We had a pretty scary hospital admission in July. We brought Félip in for a suspected UTI the week before at South Health Campus (a general hospital in the South of Calgary). After a urinalysis confirming he actually had a UTI, we went home with antibiotics. Things got better after a few days. But, about a week after the first hospital visit, Félip started having an increasing amount of seizures. We treated him with his rescue a few times over the weekend and took him into the emergency department at the Alberta Children’s Hospital on Sunday. He got progressively worse over the next few hours and ended having to be admitted to the ICU. The teams had a really hard time breaking his seizures, which were now occuring every 20 seconds. At this point, with his seizures being so frequent and relentless they deemed he was in Status Epilepticus since he was barely returning to normal in between them. We tried treatment after treatment, worringly making our way through the list of common rescue medication. We were eventually able to stop them after Félip had been fully intubated, sedated an put on strong doses of IV anti-seizure meds.

We’ve linked the Facebook posts we published below, as the events were happening. You can see how things progressed quickly and how devastating and grim those few days in the ICU were. We thankfully found the cause of the sudden increase in seizures. The UTI diagnosed the week before had progressed and gotten worse. When they cultured his urine again, they found that the antibiotic he was on was not effective for the bacteria that was causing the UTI. He was switched to another antibiotic and things got better.

This was a bit of a wake up call for us. Especially since things had been going so well lately. We’ve always been worried about his seizures and their effects as well as the constant risk for SUDEP (Sudden Unexpected Death from Epilepsy). But we hadn’t yet witnessed how severely illnesses and infections can affect his seizures and increase his health risks. This ICU admission was dreadful, emotional, exhausting and very challenging for us. We had to watch Félip go through constant seizures, his face contorted with every contraction, his body exhausted. We had to witness the teams jolt into action when he stopped breathing completely after a dose of a rescue medication. These are things we hope to never have to go through again, but, unfortunately, we feel as though we have to be ready to do so at any point, any day.

Medication

We’ve made several medication changes over the last 6 months. We mentioned in our last update that we were going to increase the Keppra (Levetiracetam) and try to remove the Topamax (Topiramate) which he had been on for while. The Topamax was completely weaned off without any increase in seizures which is great! The Keppra we increased for a while and we didn’t see any benefits in seizure control. We did however seem to have adverse effects with his breathing. We decided to take it back down to his original dose and have kept it there since.

Furthermore, after the ICU admission in July and his seizures changing a bit more, we decided to try a different medication. We started Clobazam, which is a benzodiazepine. We were very reluctant to try a benzodiazepine, having heard many horrible stories from other parents and knowing how addictive it can be. Nonetheless, the latest EEG seemed to indicate that it might be effective. We also reminded ourselves that for many people, adults and children, Clobazam is what got them seizure free. We trialed it for several weeks after which we didn’t see a difference in seizures, but we did see the effects on his system. Clobazam is a very drowsy medication. Félip seemed incredibly lethargic and sleepy. We saw Félip’s neurologist shortly after and we agreed to start weaning it off. Thankfully, it didn’t take too long to remove it and have Félip back to normal since he hadn’t been on the medication for too long.

We started a new medication trial at the end of October, with Banzel (Rufinamide). We will be slowly increasing the dose until mid-December. So far we haven’t seen any adverse effects. We’re still not sure if it’s effective for his seizures but we’ll have to give it more time and wait until we reach the final dose. We’ll evaluate it in the new year and decide if we should keep it on or start weaning it off. Once we finish this trial, we’ll probably look at trying to remove more of his remaining seizure medication. The Keppra and Sabril (Vigabatrin) that he’s still on will be candidates to wean off in the new year.

We’re always excited to try a new medication. We try not to loose hope in finding something that might be effective at controlling his seizures. Although, at this point, finding an anti-seizure drug that would be significantly effective after all the ones we’ve tried is very unlikely. Alternative therapies such as IVIG (Intravenous immunoglobulin), which is based on Immunomodulation or VNS (Vagus Nerve Stimulation) with an implant might be more likely to make a difference for Félip. We’ve discussed these with the neurology team and might start looking into them next year. These therapies involve quite a bit of process since they are unfortunately much more invasive and costly.

Félip’s seizure frequency is actually pretty low lately. On good days, anyways. In the last month or two, we’ve noticed that his bad days seem to have gotten worse. He’ll typically have a big seizure every 40 min constantly throughout the day, which renders him very lethargic and confused. But, his good days are amazing. On good days he doesn’t even have a single big seizure, just some of his smaller spasm, which are still a concern but don’t affect his day and alertness as much. On good days, he’s very awake, alert and active. He vocalizes more, smiles more, and actually gives us a hard time holding him and changing him because he moves so much. Unfortunately, we seem to be having as many bad days as good ones. We’ll have several good days in a row, even a full week sometimes, and then we’ll get 2 to 4 bad ones. Bad days are really hard, watching him go through all of his seizures and not having him talk to us or react as much to our voices and cuddles is really heart breaking. We’re trying to identify if there’s a reason or a cause for his bad days. If we could just find a correlation and fix it!

Labor day long weekend

For the labor day long weekend we decided to plan a trip to Jasper for some hiking and sightseeing with Robyn’s brother and sister. We booked a RFH (Rotary Flames House) admission for Félip for respite for the 4 days we’d be gone.

We filled our weekend packed with visiting popular Jasper landmarks and a few hikes. With having Félip at RFH, we were able to take advantage of the time to do things that we couldn’t do with him. We like to pride ourselves on taking Félip everywhere with us and being active with him, but there are things he just can’t do. We’ll probably be back to visit Jasper with Félip at some point!

Pre-school

Félip started his PUF (Alberta Education’s Early Childhood Services Program Unit Funding) funded preschool program with GRIT (Getting Ready for Inclusion Today) in September! It’s been really awesome so far and we really enjoy having someone come over to work with him everyday. We also appreciate having great therapists such as physio, occupational care and speech-language as part of the GRIT team that are all working together to try to make him achieve his potential.

Unfortunately, we often find ourselves having to either cancel preschool sessions due to health/seizures concerns or Wendy, Félip’s worker, having to leave early because he’s fallen asleep. This is common for complex children like Félip and GRIT is very easy going and understanding, they go with the flow and really just to try and help him however and whenever they can.

Birthday!

Félip turned 3 in September! We celebrated his birthday with Robyn’s sister and some close family friends for a nice get-together. As in the last years, we had a cake made for him, Batman themed this time! And notice his Batman themed attire he wore that day!

We’re grateful for every day and every year we get to spend with Félip. He’s changed so much in the last year, he’s improved and grown so much, but he’s still the same heart warming, easy going little guy.

Halloween

Félip was Peter Pan for Halloween!

We had plans for him to wear a scarecrow costume from my childhood. My mom shipped it to us in Calgary but we found out it was still a bit too big for him; maybe next year! Félip went to two Halloween parties this year with GRIT and CNIB (Canadian National Institute for the Blind) where we enjoyed music therapy and various sensory activities with all the other costumed kids!

Anemia

At the beginning of October, we did some routine bloodwork and found out Félip was anemic! We’re not sure what the cause of it is yet but we started him on an iron supplement right away and took a critical look at his nutrition. We’ll be checking his blood again in December to see if things look better. If not, then we’ll be digging deeper into other potential causes.

Unfortunately, the high doses of iron every day are causing trouble with his bowel movements. We’ve had to increase his dose of PEG (Polyethylene Glycol) and are constantly monitoring him. We’ve even had to start using Glycerin suppositories when he goes several days without having a bowel movement. We’ve also noticed that as soon as he gets backed up, he also starts holding his urine. Urinary issues, UTIs and constipation are known to be very closely linked. We’ve been having constant issues with Félip holding his urine all day and sometimes having to take him to the hospital to have an in and out catheter put in to relieve his bladder. We’re hoping that things might go back to normal once he’s off the extra iron supplements but we’re worried the urine holding might be causing damage to his bladder.

Appointments

The summer was pretty quiet for appointments, as it always seems to be. Towards the end of August things started to pick up and it seemed like we were always on the road in September and October. We had appointments with most regular follow ups for Félip like his pediatrician, neurology, vision, neuro rehabilition, and metabolics/genetics. From several of those appointments we got requisition forms to perform various testing to get new baselines for his hips, bones, blood, heart, and teeth.

We’re still waiting on a few results and some follow ups to occur but so far we’re seeing expected signs for Félip’s physical condition with regards to not being mobile and active. His hip joints are shallower than normal and his bone density/mass is low. On the flip side, all of his muscles and joints are still very flexible and have a great range, which means we’re moving him and exercising him enough for him to not develop muscle tightness or shortening.

When we saw metabolics/genetics in October we got the good news that we’d been approved for funding to send our genetic material (Félip’s and our genetic material as well) to Finland to a private lab for accelerated full DNA testing. This is a large scale test that could give us answers into Félip’s diagnosis or other conditions that could arise. We should be getting results back in early January next year which is really exciting. We are however, keeping ourselves grounded in the potential and realistic outcome of the testing being inconclusive. As we’re now aware, Félip’s condition and the underlying cause seems to be very special and rare. Since we haven’t found any answers or hints so far, it’s very likely that this test will also return with no significant results. Scientific research and advances are constantly being made in genetics, as new information becomes available in the future, it might help us find a diagnosis for him.

Conclusion

We were super busy this summer! My whole family and Robyn’s brother and sister visited in August, and we took on several projects in and outside of the house. Now that the cold weather is settling in, we’re hoping to go back to a regular cadence of blog posts. So stay tuned for more!

As always… Love. Laugh. Repeat.