Covid-19 and appointments

I usually like to update this blog when we have attended some appointments because not much changes day-to-day. Elias is a typical 11 month old - getting into everything. He is crawling around, pulling himself up on furniture and trying to walk with the help of one of his parents' hands. However, with covid-19 looming, I wasn't sure if we would be going to appointments this week.

This is how we feel about covid-19

We had 3 appointments scheduled: physiotherapy, star scan and a helmet fitting. I had called all three places to see if they were still wanting us to come or if we should lay low. Our first appointment, physio, said that they are taking patients as long as they are healthy. So off we went. The PT noticed how well he is moving now. She said that he has a couple of things to work on, like squatting, before he can start to walk which is the next stage. She also told us that Elias is on par for development when it came to mobility skills. We are ecstatic that Elias is back on track for development.

Elias' second appointment was the star scan and a follow up with Dr. Ross. The cranio-facial office is in the Children's Hospital in Winnipeg (not exactly a place I would like to go during a pandemic). When I called, Dr. Ross' office didn't know whether we would be coming in or not but informed us that they will call me back when they had an answer. This afternoon, Dr. Ross personally called me and told me that because Elias is not an urgent case we could do an over-the-phone follow-up. So we chatted for a couple of minutes and we have good news!

Elias' head shape is so close to being in the normal range that we can take off the helmet completely! Dr. Ross said that at this point what the doctors are looking for is to see if you stand 6 feet away from Elias does his head look proportionate. It does. I immediately took off Elias' helmet after the phone call. Tonight will be the first time in exactly 8 months that Elias is sleeping without a helmet. We are finishing our journey with helmet therapy but are starting the head banging awareness project. I expect that there will be a lot of tears in our near future.

helmet free

Our third appointment, the helmet fitting, will be cancelled tomorrow as we no longer need it.

Up Next:
Follow-up appointment and star scan - July

New friends, good news and bad news

Today was an exhausting day. Elias and I spent most of our day either in Children's Hospital or around it. We had two appointments: check-up appointments with the surgeons and a star scan.

New Friends

Our first appointment of the day was a check in with the neurosurgeon and plastic surgeon. As you probably already know from reading my posts, we have had several of these appointments. Nothing major to report as the doctors asked the same questions and seemed overall happy with his recovery. 

I did get to ask why the surgeons were different than the ones that performed the surgery. The reason is that they, the collective doctor team that deals with kids with craniosynostosis, likes to have regular check-ups on the kids and the schedule works out that Dr. R and Dr. S are the ones that are working at the time. 

Now onto the new friends portion! As I mentioned before, I was able to connect with a mom whose child will be going through the same thing. As we were texting, I found out that we were both going to be at the star scan around the same time today. What a great opportunity to meet and connect! As I was waiting for the appointment, I actually sat down beside another lady and child who had a clear helmet on (not the one I had been texting with. Although she did come a short while later). Long story short, we all started chatting about the process with one child not yet having the surgery, another child 1 month post surgery and Elias 7 months post surgery. Everything the mom with the child 1 month post-op said, I could totally relate to. It was definitely a mini support group meeting!

It was really great to meet with other moms who were going through the process. However, I was saddened to hear that the mom I hadn't connected with before today really didn't have any support. She didn't know anyone who had gone through the process. I did mention a Facebook group that she could join but I really should have friended her on Facebook. So if by chance you're that mom I met today, I'm sorry, we should have exchanged info. I would still like to connect.

Good News

The knowledge of people needing a connection with others brings me to part 1 of 2 for my good news portion. 

A new nurse has joined the ranks of the craniosynostosis department. She is a younger person and (not to offend any of the older generation) a little more "hip" with technology. Through a conversation with another Mom, this nurse found out about my blog and she asked me about it. I told her the details and she asked if she could share it with other families (I'm pretty sure she is going to read it first before she passes it on to others). My immediate response was yes. I really want to be able to support anyone that would be going through this journey. So now the pressure is on... (come on spell check!)

Part 2

We finally found out how long Elias will be in a helmet. 

Side note: I was reading some Facebook posts from one of the Craniosynostosis support group pages and found out that when a kid wears a helmet to reshape his or her head it is called helmet therapy.

Elias' last star scan indicated that his head shape was considered to be in the normal range. Dr. R had said today in the follow up appointment that likely we could take it off right away. However, he did mention that the head can tend to shift back to the original shape and recommended we keep the helmet on until Elias' first birthday. Both Sean, my husband, and I agreed that keeping the helmet on was the best option.

Star scan results. This is the 3-D image that is produced while Elias is in the star scan.

And now the Bad News...

After the star scan, I met again with Dr. R to discuss what our options would be with the helmet. Elias hasn't really grown from his last appointment, which is a concern for me. Also, Dr. R informed me during this meeting that Elias' head had actually grown in the wrong direction. There are two possible explanations for this: 

1. Elias hasn't been wearing his helmet or 
2. Elias' helmet is too big and not holding the head in the right spots.

Needless to say, Elias has been wearing his helmet for the recommended amount of time - 23 hours a day. So we will be heading back to Snider Orthotics, the place where we get the helmet fitted, next week to try to figure out how to get this helmet to fit better. 

I can't remember if I have stated this is in previous posts but I officially HATE helmet therapy. Don't get me wrong, it produces beautifully shaped heads but it is so frustrating when it is not doing its job! If it wasn't plastic and bad for the environment, I might just throw the helmet in a bonfire once we are done with it. 

Hopefully we can get the helmet to fit better and Elias can have a growth spurt. 

Up Next

July 2020 - Star scan and check-in appointment with surgeons.
If you will notice, July is 6 months from now which means we have a longer period of waiting between appointments. Hooray!

Elias 9 Months Update

Merry Christmas and Happy New Year!

I recently had a friend reach out to me about someone whose child is going through the same thing as Elias. As I read the text about the conditions, it sounded exactly like what Elias had and I didn't have to read through the whole thing to remember the feeling of helplessness and fear for my child. For me, having a child with a fever at home freaks me out. However, trusting God and having family and friends close by really helped me when it came to the surgery and recovery. 

I would like to let you know, if you know someone that is going through the similar situation, please don't hesitate to pass them my number or email (or this blog). I would love to talk to them about the process. They are not alone and there is a light at the end of the very scary tunnel. Also, there are some Facebook support groups for parents who have children with craniosynostosis. I can't endorse any of them as I haven't officially joined any but they are out there. :)

Elias - 8 months old. Christmas picture without a helmet. He still needs to wear it.

Elias update:

Elias is 9 months old. We recently went to his 9 month check-up appointment with his pediatrician. Elias is healthy and there are no concerns with his health. Dr. F, pediatrician, mentioned that the neurosurgeon and plastic surgeon were really impressed with the shape and progress of growth of Elias' head. She also mentioned that there is a possibility that Elias will have to wear a helmet until he is two since the head plates can continue to shift until then. When we went to the most recent helmet fitting, the technician had said that Elias will likely have the helmet on until at least one year of age, which surprised me. I was told that around Christmas to January Elias would be getting rid of the helmet. However, it really just depends on growth spurts. Elias is at a lull for growth right now. He is way too interested in trying to figure out how to crawl and get all of his big brother's toys lying on the floor.

When we take off Elias' helmet, his head is looking great. His scar is minimal and his blonde hair, which isn't thick, covers it up. You have to search for the scar to find it.

9 months old. Can you spot the scar?

With the helmet on.

Elias was in a photo shoot for the Snider Orthotics Design Company. Snider Orthotics is where we go to get helmet fittings. I think that they were updating their website and we just happened to be there while the photographer was there. No toddlers and tiaras for us. I haven't found the picture yet but if I do, I'll be sure to post it.

Elias had his first swimming lessons today (aka I'm in the water holding Elias while he splashes around). For those who may be curious, Elias can do any activity that any kid his age would engage in. We just have to take off his helmet while he swims. The time we use to have his helmet off during swimming lessons counts toward the hour he is allowed to have his helmet off during the day. Elias did really well in the water as he didn't cry once. His mother, on the other hand, was NOT a fan of the cold water.

Up Next in January:
Follow-up appointments with Neurosurgeon/Plastic Surgeon
Helmet Fitting
Waiting for a growth spurt

7 months old update

I have a confession...I wrote a post last month meaning to post it and didn't. So now I have the trouble of updating a month old post to fit this month. 🙈

Elias has been wearing his helmet for 4 months, which means that over half his life he will have been in a helmet. Elias has been an absolute champ in wearing it. He only recently has been touching it as he seems to know that it is covering his head now. However, he is becoming an escape artist as one morning when I went into his room he seemed managed to wiggle completely out of his helmet.

October Happenings

We had a helmet adjustment done recently and the helmet specialist told us good news. Typically, the doctors want children's heads to be in a range from 78-84 (I'm not quite sure the units/language they measure). Elias is at 77. He originally started at 63 which means he is growing fast at the right rate. Hurray! These numbers could mean that Elias could be done with the helmet sooner rather than later. However, I'm not holding my breath. The doctors could also choose to keep him in a helmet until he is one. I'm praying that we get rid of the helmet by Christmas. 

UPDATE: We had another helmet fitting and follow-up with the doctors. The doctors were really happy with Elias' progress in the growth of his head. He is almost in the "normal" proportions for his head. However, he will continue to wear a helmet until at least January, which is his next head scan. 

Next week, we go in for a helmet fitting for a new helmet as his currently helmet is getting quite tight for Elias' head. The helmet will be the same except that it will be bigger. I'm hoping that this helmet will be a better fit and not slip off his head as much. We did have one month of no slipping with this helmet which was fantastic. Hoping the next three months we won't have any issues with the next helmet. 

I did it folks! I finally got a picture of the scan of Elias' head. The inner pink oval is Elias' original head shape. The two blue ovals show the growth from two separate scans. 

Physiotherapy

We also attended physiotherapy recently (October). The child development doctor had referred Elias because the helmet was fairly heavy and she was concerned with his movement. Sean and I have worked really hard to help Elias with his head control while sitting up. So when we went to physio I thought it would be a 5 minute assessment telling us that he was fine. As it turns out, we have some work to do. 

It was recommended that we do more tummy time with the helmet on which we hadn't done a lot of. Typically we would take the helmet off to do tummy time. 
Update: Elias still is not great at tummy time. He really refuses to do it. Since he is not great at it, he is delayed with rolling and general movement. We went back to the physio today and she has given us some more "exercises" for Elias to do. Out of all the things we were to work on since October, I feel that Elias has progressed the least in this area. 

Another thing we are to work on is Elias' sitting and grabbing objects. Elias has reflux (he spits up after feeding) which causes him discomfort when sitting. Also, his leg muscles were tight which hindered him from sitting. He would often lean backwards when he was sitting. The physiotherapist taught us how to correct his sitting and today he can sit for long periods of time.
Update: Elias is so good with sitting now! He seems to really enjoy it and although he still tips over he can sit for long periods.

Elias also has problems grabbing things because he doesn't extend his thumbs out (he keeps them curled in like he was signing the letter b in sign language). As Sean and I play with him, we have to encourage him to open up his hands completely to grab an object. 

ASL - the letter B. 

Update: Elias is slowly learning how to open his whole hand to grab an object. He is still needs to continue to work on it. The therapist noticed that Elias likes to only use his right hand so we will be working on getting him to use his left hand to grab things. At this age, babies should be using both sides as they don't develop a preference until age 2. 

It is quite amazing how Elias has improved over a short amount of time. The physiotherapist has been really great and encouraging as we go through this process. She has noticed and commented on how Elias is an independent child. He likes to do things his own way and doesn't always want the correction. He only wants to do things when he has figured out he can do it. 

I am so amazed at how smart he is. During the last physio session, he let the therapist know that he didn't like what she was doing by crying. As soon as the therapist changed the unwanted activity, Elias immediately stopped crying. It is so fascinating to see someone challenge him in his skill, knowing what he is capable of, and his reaction to that uncomfortable situation. I am only realizing the stubbornness independence Elias will likely have as he grows up. 

Elias' trip to the hospital

On August 22nd, Elias had three appointments at the hospital - Genetics, follow-up appointment with the Neurosurgeon and Plastic Surgeon, and another star scan.

Elias without his helmet with his big brother.

Genetics testing

The genetics testing was done to see if Elias has a syndrome that is related to his head condition. All the research Sean and I have done pointed to Elias not having a syndrome but we're not doctors so we went.

We had a really nice resident doctor who was specializing in pediatrics. Dr. James (I only remember his first name) was sent in before the "actual" doctor to ask me some questions about our family tree/genetic makeup. I really should have prepared more for this "test" because I had to think of any disease or illness that had ever happened in my or Sean's family. Never the less, I think I got most of the information that was important for the doctors to understand our genetic makeup. I was also asked some awkward questions which I think the resident was trying really hard to be kind about. One of the questions was "Is there a chance that you are related to Sean?" Nope, definitely not. 

Once we were done with the first doctor, the second one came in. (Unfortunately, I forget his name. He said it a couple of times and I still didn't get it. Also, I shredded my medical papers for Elias so if it was on there I have no proof of it. Lets call him Dr. G for Genetics) Dr. G was also very nice. He asked me if I had done any research on Elias' condition and after I replied yes, he continued to tell me that Elias' condition usually has significant physical signs if it is a syndrome. The signs include his fingers and toes are fused together as well as a large nose, which Elias has neither of those. There might be more conditions that relate to the syndrome but the previous examples are the most noticeable.

So just like that, we were cleared from the syndrome. Dr. G told me that it is unlikely that Elias has a syndrome dealing with Craniosyntosis and that sometimes these things happen. He did note that Elias' sclera (whites of his eyes) were grey. Dr. G said that likely Nathan had it as a baby and that it will change to white as he grows. No need for concern. We were told that we didn't need to do any follow up appointments but could always come back if in the future Elias showed signs of developmental problems. 

Can you tell they are related? Sean is on the right. What a cutie!! Elias definitely has Momma's chin.

Follow-up Appointment with Neurosurgeon (Serletis)/Plastic Surgeon (McGregor)

The follow-up appointment with Dr. McGregor and Dr. Serletis was short. Dr. McGregor checked Elias' head and was really happy with the progress. She told us that we also didn't need to follow up with her anymore. (So we dropped two doctors in one day!) Dr. Serletis will still follow us as Elias continues to grow. We might also be seen by Dr. Ross, who is a neurosurgeon. I didn't ask why we are seeing different neurosurgeons but my guess is that we will see whoever is available at the time.

Star Scan

The last appointment was a star scan. Elias wasn't very cooperative for this scan as the bigger he gets the more he wants to wiggle. He doesn't like his head to be held but enjoyed looking at himself in the reflective surface of the machine. I might bring a mirror next time so he can distract himself and hopefully will stay still.

This scan was for comparative reasons.  Next helmet fitting appointment I should get the results of how his head has changed from before he had his helmet, post surgery, to now. Hopefully I will get a picture and show you the results. 

Up Next

• Continue helmet adjustments to make sure everything is going well - about every 3-4 weeks
• Follow-up appointment with Dr. Serletis or Dr. Ross - end of October

A big thank-you goes out to my Father-in-law, Dave! He came into the city to look after Nathan while I took Elias to the appointments. Although the appointments went smoother than expected, I was glad to not have to "drag" a three year old around the hospital all day. 

The helmet

Wow! It has been awhile since I have posted anything on the blog. We have been enjoying some quiet time at home as we haven't had to rush to and from the hospital for appointments. 

I last left you, over a month ago, with Elias waiting to get his helmet. On July 18th, he was fitted for his helmet and we started to break it in. Over the next 5 days, we put Elias in the helmet with the 5th day having the helmet on for 23 hours a day. Also during this time, we went camping. Don't fret too much for us as we had my parent's hard-walled camper to sleep in, which has air conditioning. 

Elias has been adjusting well to the helmet. The helmet itself is a little frustrating. Elias has managed to wiggle in it and it shifts down past his eyes. A friend joked with me today that it is an eye guard for when Nathan might get too close with toys! We have had a couple of adjustment appointments to get the helmet from slipping down and I think it is finally good. Overall, Elias is used to the helmet. The helmet doesn't seem to bother him when he sleeps. 

Trying out the exer-saucer. Loving the big cheeks!

The 3 of us had a visit with my parents recently.
You can see how the helmet has slipped down to cover his eyes.

Child Developement Appointment

On Friday, July 19th I received a phone call from SSCY, Specialized Services for Children and Youth, to arrange an appointment for Elias to meet with the Child Development Doctor. They had a cancellation that day and I was able to take it. So off we went to SSCY, the old Christies' Cookies Building on Notre Dame Ave.

Dr. Ricci was the doctor we saw. She checked out Elias' development which included his reflexes, how he lifted his head, and how he tracked objects. Elias did really well with only some minor issues of holding up his head with his helmet on. Dr. R noticed how social Elias is as he would smile at her instead of tracking an object with his eyes. 

At the end of the appointment, Dr. R said that she wasn't concerned with Elias and his development. She also said that we had an excellent pediatrician and if our pediatrician thought we needed a follow-up later on, she could book it. Dr. R also referred us to a physiotherapist for Elias' head control. She thought that a physiotherapist could give us some exercises, besides tummy time, to help Elias strengthen his neck since his helmet is quite heavy.


4 Month Appointment

During this month, we also had Elias' 4 month appointment. He had his immunizations and check-up. Everything was pretty routine except for the fact that Elias is not pooping regular. Dr. Feierstein, Elias' pediatrician, suggested that we try to put him on solids and add some water to Elias' diet. As much as I have tried, Elias is not interested in eating yet. We will continue to try but we are not aggressively pushing it. Elias is content and happy so I've been trying not to worry about it too much. 

Elias' growth has been really great. Compared to the rest of the world, Elias is in the 50-75 percentile for his height and weight. His head circumference is in the 95% for his age. So we have a big headed kid. As long as he is gaining weight and content we are all happy!

Up Next

• August 22 - A day of appointments - Genetics testing appointment, follow-up appointment with Neurosurgeon and Plastic Surgeon, and star scan (to check progress). 

Follow-up Appointment and Illness

Follow-Up Appointment

Elias had his follow up appointment with the neurosurgeon on Wednesday, last week. A different neurosurgeon saw Elias because his neurosurgeon, Dr. Kazina, was on holidays. Dr. Serletis checked out the stitches and said everything looked good. The doctor was happy with the progress.

I asked Dr. S about whether Elias could experience his senses differently now that his brain was no longer "squished". We noticed on Sunday at church that when the music was playing, which was rather loud, that Elias started to cry. Elias had never cried during the service before. Dr. S. said that although Elias' condition was mainly a cosmetic one, he could have been experiencing pain. He also compare the surgery to that of unbuttoning a tight pair of pants. His brain is now allowed to "breathe". Elias is still the very content baby he was before but now expresses himself a little more.

3 months old

Helmet/Star Scan Appointment

Elias had his second star scan appointment on Wednesday as well. The helmet is made in California and shipped to Winnipeg for the technicians to shape it to where they want his head to expand. We are expecting for the helmet to arrive in a week and a half as we have a helmet fitting appointment on July 18th.

Here are a couple of questions I asked the technician at this appointment:

1. How long does it take for Elias to break in the helmet?

• Over the course of 5 days, we will put Elias in the helmet for short amounts of time to get him accustomed to it. Each day we will increase the time Elias is in the helmet. By the end of the 5 days, Elias will be fully accustomed to the helmet.

2. How many hours a day does Elias have to wear the helmet?

• 23 hours a day with one hour to let him bathe

3. How long will Elias have to wear the helmet?

• The technician said that it could be around 5 - 6 months. He may need a second helmet fitted to him as he will likely outgrow the first helmet. 

A comparison of before and after

Nathan and Illness

Unfortunately, we are still dealing with an "illness" in our house. When Nathan came back from camping with my parents, we noticed he had a little scrape on his nose. We asked him about it and he couldn't recall where he got it. We proceeded to ask my parents and they also didn't know how he got it. We figured it was just a scrape and it would heal. However, his sore/scrape expanded eventually turned into a rash. I brought him to the doctor and she told us that he has impetigo, a skin infection which affects children around 2 - 5 years old. Nathan is on oral antibotics as well as a special ointment for a week. The doctor told Nathan that his medicine will taste like bubble gum which made him really excited to try it. Once he tried it, he wasn't as excited about it. So as every good parent does, I bribed him to take it. I told him we would get real bubble gum after he was finished all of his medicine. He had been doing really well to take it!

Next Up

• July 18th - Helmet fitting
• August 6th - Four month appointment
• August 22nd - Genetic testing
• August 22nd - follow up appointment with neurosurgeon and plastic surgeon
• August 22nd - Star scan (I'm assuming to check progress)
• Date unknown - developmental testing

Post-op and Recovery

In the Hospital

Elias' recovery has been amazing to watch. While in the hospital, Elias was given morphine and Tylenol to help deal with the pain. On Thursday, the morphine dosage was eliminated and we waited to see how Elias would react. The nurse informed us that if Elias needed it they could give him a boost of morphine through his IV. However, the Tylenol helped him with the pain which meant we could go home.

Once Elias was successfully off the morphine, we had to wait for the doctor to give us the thumbs up. Since Elias was no longer hooked up to any machines, we were moved to another room on the floor. We weren't expecting to stay long but we were there for a couple of hours to wait to hear from both the doctor and occupational therapist. According to the initial consultation with the surgeons, we would need a wedge and sling to hold Elias upward while he slept. However, the nurse told us that this policy is changing and we didn't need to have Elias' head higher. By 5 pm, we were discharged and on our way home.

The nurse told us that we can resume normal baby activities with the exception of dunking Elias' head under water. We are to keep his bandages on until we have our follow-up appointment, which is proving harder than expected as Elias likes to grab at them. This morning, Elias' toque and bandages were off. Sean put everything back on his head and they stayed there until he grabbed at them in the evening.

At Home

Elias has been doing really well at home. He was quite bloated after the surgery but has been getting rid of the water quickly. He is also sleeping really well. Last night he slept for around 11 hours straight. Both Sean and I checked up on him during the night. He was lying there breathing so we let him be. I don't expect a repeat of that any time soon, but it was nice when it happened. 

Like I said above, Elias is only on Tylenol, which he can take every 4 - 6 hours. We have had a couple of times where we felt he really needed some pain relief so we gave him some before the 6 hour mark. We want to stay on top of the pain but it seems like he is not needing as much now. 

Nathan

Nathan has been really good with his little brother. We talked to him about seeing Elias after the surgery. We didn't know when Elias would be getting a helmet so we told Nathan that Elias may have a helmet when he saw him next. The first thing Nathan said when he saw Elias was "where is his helmet". Nathan is very careful around Elias. He is quick to tell people that they are not to touch his head.

Up Next

July 3rd - Neurosurgeon follow up appointment

July 3rd - Second Star Scan/Plastic Surgeon follow up
Date unknown (likely this will happen in a week or two) - helmet fitting
In August - genetics testing

This is the only picture I took of Elias outside of the hospital. We were sitting outside in the shade, enjoying the fresh air

Surgery

I'm going to let Sean's words fill in for me today. This was in his Instagram. I don't know how to edit pictures on this program so there is repeat on the pictures.

Here are some pictures of Elias.

Doll outfit?

Elias right after surgery with all the machinery.

Eyes open! 

The God factor

We are so thankful for all the thoughts and prayers that we have received. After Elias' surgery, the plastic surgeon called me to say he was out and heading to PICU. She also said that the surgery went extremely well. As she talked, all I could think about was how God had answered prayer. 

Throughout this journey with Elias there has been amazing moments of God's intervention. I am reminded of how big our God is in moments when we are helpless.  As the old doxology goes "praise God from whom all blessings flow."

Up Next

Recovery 

MRI and Anesthesiologist Appointments

This week has been exhausting. Elias has been feeding every two hours at night for the past couple of nights. Also this week, we had to go to the hospital for three appointments instead of two. 

MRI of the Brain

On Wednesday was Elias' MRI. For the MRI, Elias had to be absolutely still for 30 minutes. In order to get him to do so he had to be asleep. In the afternoon appointment, I tried to get Elias to sleep but wasn't able to. The technicians asked if I would be able to come back after supper and try again. If Elias wasn't able to get his MRI by falling asleep, he would have to be sedated, which I didn't want to do. So we waited for the call and when we received it we tried to keep Elias awake until we got to the appointment at 8 pm. Fortunately, it was late enough at night that we eventually got him to sleep and the MRI scan was successful. The MRI is used during the surgery so it is important that we got it done that day.

Elias had to wear ear plugs for the MRI. His ear plugs were cotton balls stuck on with medical tape. 

Anesthesiologist

Friday was the anesthesiologist appointment. At that point, I still hadn't received any information about the time so I asked the nurse who was checking us in. We officially have a surgery time at 7:45 am, the first appointment of the day.  We are to be at the hospital for 6:15 am. 

The latest I am to feed Elias is 3:45 am. So I will be setting my alarm clock for 3 am to make sure he is done feeding by 3:45 am. If he is still hungry, I am allowed to feed him sugar water until 4:45 am at which he is no longer allowed anything else. 

While at the Friday appointment, Elias was also to get some blood work done. The technicians tried to get some blood but weren't successful. So we went back to the anesthesiologist and she said that they will be able to take him blood work once he is sedated at his surgery. Hurray! No more blood work. 

Questions?

I've had some consistent questions asked when talking to people in person. So for those I don't talk to on a regular basis, here are some questions that you might have.

How long is the surgery?

5 hours and 15 minutes 

How are you feeding Elias while in the hospital?

Right now, I am breastfeeding. I am planning to pump while Elias is in the hospital. Elias has to remain upright (to help with the drainage) and will have a lot of tubes coming out of him so he can't be picked up. I am not entirely sure if he will have a feeding tube or will be bottled fed in the hospital (I'm assuming it will be via the bottle). I have bottled fed him already to test it out (mainly I wanted to see if I can leave Elias at home with Sean while I go out) and Elias didn't have any problems taking the bottle. If for some reason Elias needs more milk than I can provide him, he will be given formula (which is fine with me). 

How long will Elias be in the hospital?

He is scheduled to be there for 5 days. One day in the PICU and 4 days on the ward (CK3).

Are you staying in the hospital?

Yes, although there isn't any beds for parents in the rooms. I will be staying close by so that I can be woken up to feed (pump). I believe in the CK3 ward, there is a nurse who monitors the child so I don't have to stay with Elias the whole time. There is an amazing room called the Ronald McDonald Room that looks like a house (couches, tables and chairs, tv, wifi and computers with internet, sleeping rooms and food). If Nathan was going to be with us, he could go there to play but we will likely hang out there when Elias is asleep or in surgery.

How are you feeling?

Right now, I am fine. I'm not nervous or anxious about the surgery, just tired (as every new mom is). I will be nervous and anxious on the day and likely won't sleep well the night before.

NEXT UP

June 25th @ 7:45 am - Surgery

Eye Exam and Star Scan

We had a very busy day for Elias on Thursday. He had two appointments: eye exam and star scan.

Eye Exam

We arrived at least 20 minutes early to make sure I could find the place.

If you've ever been in Children's Hospital in Winnipeg, you will know that it is a maze! On the floor level, there are three elevators beside each other, each going to different buildings. If you get on the wrong elevator, you can't get to your floor or you are half a floor too high or low. In fact, at least two of the elevators have a front door and a back door with different labels for each level.
I took a tunnel in HSC to get to the elevator, as the tunnels are faster than walking outside. When I got to the elevator it was out of commission due to maintenance.
So my options were:

1. pull the stroller up 8 stairs
2. go back through the tunnels and go outside to the entrance
3. try a different elevator to get to my floor.

So I back tracked to a different elevator, went up one level and walked back over to the elevator just one level up. There was a sign that these elevators were out of commission. Fortunately, a lady at the kiosk, close to the elevators, told me that if I pressed the button anyway, one of the two elevators would open and let me get to the level where I needed to go. Success!

 Once we found the place and checked in, there was at least 5 people called in before us. I couldn't figure out why Elias was not getting called and my momma bear instincts were running wild in my head. However, I did practice my best patience as we waited.

The appointment was very basic. After a short chat, the Ophthalmologist, Dr. Shuckett, tried to get Elias to track an object with his eyes. He was able to do it but not for very long. Then the doctor put eye drops into Elias' eyes. We had to wait for 30 minutes for the drops to dilate his eyes (which is why the others were called in before us as they had already waited the 30 minutes). When Elias' eyes were ready for examination. it was fairly difficult for the doctor to examine Elias as he didn't want to keep his eyes open. Once the doctor was able to look into Elias' eyes he told us Elias is farsighted, which is normal for children Elias' age. Dr. Shuckett said that he will be telling the surgeons that his eyes are fine.

Star Scan

The star scan is a 3D image of Elias' head. He will have to have another one after the surgery. The star scan is to help the helmet makers make the helmets for post surgery.

For the scan, Elias had to wear a little do-rag over his head with a sticker on each temple. He was then placed into a 3-sided glass box and what looked like a scanner light came across and scanned his head. It was very important that Elias stayed still for the scan as any little wiggle will make the image blurry. The picture is immediate and I wish that I would have asked to take a picture of the scan. I did glance at it but didn't think to ask to take a picture.

Fortunately, Elias was fairly sleepy for the scan and we only had to try it twice.

The helmet maker, Amanda, told us that Elias' helmet will be clear so that his incision can be seen from the outside.

#crazyhairdon'tcare

Our little gangster

just laying down some rhymes

We haven't received any further information about the exact time that Elias will be having his surgery but am assuming that it is on the 25th still. I asked one of the nurses at Elias' star scan about the time of the surgery and she checked into it. Apparently, it is the neurosurgeon's office who does all the scheduling. The nurse asked her contact to remind the neurosurgeon's office to mail out the letter of the surgery date and time. We will be waiting patiently by the mailbox. 

Prayer request

Please pray that the date of the surgery stays the same.

Next Up

Wednesday, June 19th - MRI

Friday, June 21st - Anesthesiologist appointment

Tuesday, June 25th - Surgery 

Immunization shots and pre-op paperwork done

Two Month Immunization and Check-up Appointment

On Thursday last week, we visited Dr. Feierstein's (pediatrician) office for Elias' two month appointment. He weighed 12 lbs 8 oz. He got his immunization shots and is hitting all the developmental milestones for his age. Dr. F wasn't concerned about Elias' development.

We were able to take a little time to talk a little about the surgery and expectations of it during Elias' appointment. Dr. F mentioned that Sean and I should talk about who will take care of Nathan while Elias is having surgery as the hospital is not fun for 3 year olds. Fortunately and frankly God's perfect timing, Nathan will be hanging out with my parents and nephews for the week that Elias is having surgery. For the second year in a row, my parents are braving the chaos of having 3 children under 5 camping in a trailer. Nathan has been looking forward to this trip for a long time. Almost every time we call Grandma and Grandpa, Nathan asks when is he going camping with them. He is so excited to go as he has already started to pack his toys that he wants to bring camping!

Before Pictures

I thought I would include a couple of "before" pictures of Elias for those that don't see him very often. I tried to capture the length of head for you. Once you see him in person, it is more obvious.

Side view of Elias' head. The forehead is starting to protrude. If we didn't have the surgery, the forehead would continue to grow. Right now, Elias' cheeks are chubby so the proportion of his head is not as obvious in the picture.

Top view of Elias' head. His head is long and narrow. 

2 month old picture. He is bigger than his bear.

Schedule

Our schedule is getting busier as we approach the surgery date. Here is what we have coming up in the next several weeks.

• June 13th - Eye Exam. I believe this is to check for pain. No one has explained how they can figure out if Elias is in pain by looking into his eyes but they can. 
• June 13th - Star Scan (I was wrong about what this is. It is not an MRI. It is a scan of the exterior of his head. The scan is used for helmet fitting.)
• June 19th - MRI Scan. The MRI is done to help the doctors during surgery.
• June 21st - Anesthesiologist Appointment
• June 25th - Surgery. No time set.

We are waiting to hear from the genetics department as well as child development department. These appointments are not as urgent which may be the reason we haven't heard from them yet.

Surgery Date and Star Scan

I want to thank you all for reaching out after I posted my last post. I didn't realize how many people I didn't tell about Elias' condition. Sean and I really appreciate all the support and prayers. 

According to sickkids.ca, 1 in 5000 children have sagittal synostosis when they are born. I have talked to two people already about how they know someone whose child had craniosynostosis. I hope to connect with a parent to gain their perspective on what happened to their child as they went through surgery and post-op. It is a lot less scary knowing that others have gone through the same situation with successful results.

So we have a date. June 25th is when Elias will have surgery, assuming he doesn't get bumped by someone else. I don't have any more information about the surgery yet besides a little pamphlet I received in the initial appointment. We are expecting to get more information mailed to us to explain what will be happening. 

 

Elias is also going to have a star scan on June 13th. I'm not entirely sure what type of scan it is. It might be an MRI. The star scan will take a picture of his head so that the doctors can have a precise image of his head before surgery. 

We have experienced a star scan before. Nathan had a star scan done on his head when he was around 6 months. Nate favoured one side of his head and developed a flat spot on one side. He had to wear a helmet for 6 months. In order to make sure the helmet fit, he had a star scan. What I can remember from the scan was that Nate had to lie very still and the room was fairly dark. The technician/doctor had this weird flashing light that was used to distract Nate and help him to look at the proper place. It was fairly stressful trying to make a child lie so still. From what I remember, I think Nate did fairly well lying there.

Once Elias is healed from his surgery, he will have to have another star scan so that they can compare the before and after and (I believe) to make a helmet. So we will have another child that wears a helmet. Unfortunately, we don't get to pick a fun print for the outside of the helmet like we did with Nathan. I was already told that Elias' helmet will be white. Elias, like Nathan, will have to wear the helmet 23 hours a day, every day. The helmet doesn't hurt as it doesn't put pressure on the head. Instead, the helmet allows for the head to grow in the areas where it needs to fill out. 

Here is Nathan wearing his helmet. The helmet is open at the top of his head and held in place with a strap on the side. His helmet is hard on the outside and foam-like on this inside.  I imagine Elias' helmet will be different. 

We've had several people ask us how we are doing. I never really know how to answer. Initially, we were in shock.  We have definitely questioned ourselves with why this would happen. At this moment, I would say that we are at peace with the idea of Elias having surgery. I am able to explain the situation to people without crying. As we get closer to the date and proceed with appointments, I think we will get more anxious about everything. I still have a lot of questions that will be answered in time. Honestly, I wish we could get the surgery as soon as possible. Waiting is the hardest part. 

So for right now, we are hanging out and enjoying Elias. Today, he looked right at Sean and gave a huge smile! I tried to get a picture of his smile but he would not perform for his mom! I'm going to have to go on stealth mode to get it.

Psalm 46:1 - God is our refuge and strength, a very present help in trouble.