Getting Back To Normal...I Think

It has been a while since we all drove home as a family from Delaware so I thought I would post an update on here.  Things are slowly returning to normalcy in the Laurin household.  After spending two months away from home, young Wesley almost forgot that he had a house and toys and dogs here to play with.  He was so happy to be home in the first couple of days and so were Kaela and Sarah.

Kaela is getting better every single day.  She is able to sit up on her own and walk a little more each day.  She still needs help with some things like making it to the bathroom and getting dressed however I’m skeptical as to how much help she really needs.  Yesterday I was doing something in another room and I came out to see how Kaela was.  She had a whole bag of grapes from the refrigerator and she was busy munching on them on the couch.  William was sitting next to her and I told him how nice it was for him to get his sister things to which he replied “I didn’t get them, Kaela did.”  The little girl who nags me for 20 minutes to get her a snack out of the fridge one day secretly is able to do this on her own when she thinks I’m not available.  

Kaela flying a kite from her stroller

As Kaela heals she is in a process of re-learning how to do things in some ways.  Her body is a bit different than it was before she left for Delaware so she is finding new ways to move around and just do the things she was doing before.  We took a day trip to Oval Beach in Saugatuck, MI yesterday and Kaela was able to play in the sand.  She has been wanting to go to the beach for months and she finally got to do it.      

Kaela Gets Through Surgery With Flying Colors!

Two days post op and Kaela is recovering well.  She was in a lot of pain right after the surgery and she still has trouble moving around but she is getting better every day.  We got her out of the bed yesterday and today to do a little physical therapy.  She has to work on strengthening her body after hanging for so long and not utilizing all of her muscles.  Even though it is really hard for her, she manages.  She is such a strong little girl. 

Kyphosis before the halo traction or rod implants

Kyphosis after insertion of VEPTR Rods

The change from the surgery is very dramatic.  Dr. M was able to bring Kaela's Kyphosis curve from roughly 110 degrees down to about 0.  The x-ray of her spine from the side pretty much looks like a typical person’s.  The scoliosis has also decreased dramatically.  There was a chance that Kaela would have to wear the halo with a vest even after the surgery but luckily she didn’t have to.  We were also counting on her wearing a protective vest for a while after the surgery.  Dr. M did such a great job that the vest was also not needed.

Kaela fresh out of surgery on May 22

Kaela's first time in a wheel chair post-op

As long as Kaela keeps progressing this way, we are scheduled to come home to Michigan on Friday June 1.  I know Sarah, Kaela and Wesley will be super excited to make it back to Michigan as they have been out here in Delaware since April 4^th of this year.  We can’t believe the time is almost here for Kaela to come home.  Her time here so far has been a complete success and we couldn’t have hoped for a better outcome.  We have so many people to thank who have put time and resources forward to help out our family.  There are also numerous new friends that we have made during our stay here.  We are now counting the days until our family is back home in good old Dexter, MI.

Mother's Day @ Alfred I. Du Pont in Delaware

William and I are going back to Michigan tomorrow so we decided to celebrate Mother’s Day at the hospital.  I can’t think of a more deserving mother than Sarah after she has spent the last few weeks taking care of Kaela, an infant and working for 20 hours per week.  Wow!

A few days before, Kaela and I went down to the child life room where they were hosting a shopping center for Mother’s Day.  Kaela got to pick out four gifts to put in a bag for her mom.  Today William, Wesley and I ran out and got Sarah something she has been dreaming about for a while, a fancy new Nikon camera.  Kaela and William made cards for mom after we told her to leave the room for a while.  The kids were very excited to give Sarah her presents.  Happy Mother’s Day Mom!  We Love You!

Kaela's Friends Come For A Visit

Passing the time here at the hospital can be a challenge when all you have to do every day is a couple of PT appointments.  The rest of Kaela's time (and Sarah's) has been filled with TV watching or walks around the hospital, both of which get old real quick.  Over the past week or so though our family has been fortunate to have many special visitors.  On Tuesday Simon and Jude came from Maryland and spent some time playing with Playdoh in Kaela's room.  Then Mia and Samantha came to see Kaela later on.  The next day our friend's Kale and Grey came to visit and brought us dinner.  Most of these people our family was meeting for the very first time and we are so thankful that they took the time to stop by and say hey.  I know Kaela really enjoyed their visits too and it helped a lot to break up the week and make her days go a little faster.

Samantha, Kaela and Mia making bracelets in the Child Life Room

Kaela and William playing with Playdoh with Simon and Jude

Kaela and Grey hanging out (and William laying in Kaela's bed watching TV)

We would like to thank everyone that came out to visit Kaela and we hope to see you all again real soon!

Dad & William Surprise Kaela

Matt and William were not supposed to come back out to Delaware until the 19th of May but they had to come out a little earlier on the 6th of May instead.  We were going to tell Kaela about the visit but instead kept it a secret from her so that we could surprise her.  William and Matt left Michigan on Sunday the 6th and drove for 10 hours arriving at the Du Pont Children's hospital in Delaware at 1:15 am.  The next morning mom told Kaela that there was a surprise for her that day and that she would get to see it later.  Matt and William stayed at the Ronald McDonald house after they arrived and came up to the hospital the next morning.  Kaela was very, very surprised and happy to see her boys!

This pic is blurry because Matt and Kaela are jumping up and down

 

Kaela gives dad a hug

Wesley is happy to see his boys too

William was super happy to see his sister, brother and mom after not seeing them for a few weeks.  He kept telling me that he didn't miss them but you could see it in his face that he was really excited to see them again.

A Family Apart

William and I left Delaware today to come back to Michigan for work and school.  Sarah will stay with Kaela and Wesley at du Pont for the next four to five weeks while Kaela is in halo traction.  It is really hard leaving them behind knowing that Sarah will have to take care of our infant son while working 20 hours per week and taking care of Kaela.  We do have some help coming however so maybe that will take some of the pressure off of Sarah while she is out there.  We have many wonderful family and friends who have taken time to be out there for short periods to help with the baby. 

Luckily we live in an age where technology is advanced enough that we can communicate cheaply and actually see each other.  We have Skype as well as face-time on the iPhone so that we can at least see each other while we are apart. William and I will return to Delaware in May for a week for Kaela’s second surgery where she will have rods implanted on her spine.  Hopefully about a week or so after that procedure, Kaela will be able to come home. 

Kaela Gets Out and About

Kaela is moving along very well with her care here at du Pont. Yesterday she was able to get into her wheel chair for a couple hours and visit the child life room here at the hospital. She played with Play-Doh and just enjoyed spending time out of the room for a little while. They have also added more weight to the chair. She is up to 14 pounds pulling on her from behind. Kaela only weighs about 29 pounds so that’s about half her body weight.

The nurses were also able to detach Kaela from all of her IV’s. Kaela hates having IV’s in her hand and the ones attached to her torso were also removed. It makes it a lot easier to get her in an out of bed without cords all over the place. While she is in bed she is usually watching cartoons. The hospital has a pretty nice TV system with built in movies, internet and television. Not sure what we would do without that.

Kaela has also started receiving cards from friends through the Nemours eCard system supported by the hospital. It’s very easy for people to go online and make a card for Kaela to receive. She loves getting these cards so if you have the time please make one for her. Its fast, easy and free!

To make an eCard:

• Visit ecard.nemours.org
• Click “send a smile” eCard button
• Choose from one of 80 different designs
• Type your message (be sure to include your name at the end of the message so we can tell Kaela who the card is from)
• Type the first name of the patient (Kaela)
• Type the last name of the patient (Laurin)
• Type the patient’s room number (3407)
• Review your card before sending and that’s it!

Go Kaela!

Kaela is progressing exceptionally well after just having major surgery on Monday. She felt well enough that she is able to move to a wheel chair. The transformation that has happened already is amazing. Her back is so straight! She looks much longer than she did before. Currently she is keeping food and liquids down. The doctors decided to keep her in the ICU for one more night because there were not any general rooms available today. Tomorrow she should be able to move to another room off of the intensive care unit where she will be for the remainder of her stay here at the Alfred I du Pont Hospital for children in Wilmington, Delaware. Go Kaela!

Kaela Is Out of Surgery

Kaela is officially out of her first surgery and it appears to have been very successful. During this procedure Kaela got a central line implanted in her chest. It is basically a tube that will allow for pain and other medication to be administered quickly. She was also outfitted with a halo that she will have to wear for the next 6 to 8 weeks while her spine straightens out. The surgeons cut some ligaments near her vertebrae to allow the spine to unfurl more easily. As you can see from the pictures below, the change was very dramatic. Dr. Mackenzie said it was the most dramatic change in curvature he has ever seen from a procedure like this.

Kaela's spine before the surgery (almost a 100 degree curve).

Kaela's spine after the surgery. It has virtually vanished!

Kaela is now resting in her bed in the intensive care unit of the hospital. She has weight applied to her halo so that her spine will continue to straighten. She will likely have to stay in bed for the next few days at which time she will be able to move to a wheel chair and then eventually a walker outfitted with a pulley system and weights.

Pre-Op Appointments

Kaela spent the last three days visiting lots of different doctors in preparation for her first surgery on the 9th of April. She has been evaluated by pediatrics, anesthesia, pulmonary, cardiology, and folks in physical therapy. She has also had some x-rays, a CT scan and MRI performed. Everything seems to be going smoothly. We met briefly with Dr. Mackenzie on Friday and he went over details of the initial surgery.

These will be the last days that Kaela will have outside of the hospital for about 8 weeks or more. We spent the day playing at the Ronald McDonald house and then went to a local park called Can-Do Park. We played there with the kids for a couple hours before grabbing some McDonalds and coming back to our temporary home.

Check back soon for more updates!

Kaela Says Goodbye To Her Pre-School Class

Kaela is truly blessed to have so many wonderful people in her life making her upcoming trip to Delaware for surgery a little easier to bare. Kaela’s last day of pre-school was last week and she got to say goodbye to all of her classmates. Her teachers had said that they were planning a surprise for her but we had no idea that there would be such a large out-pouring of support. Kaela received a stuffed teddy bear from her teachers along with a scrap book with pictures of all her classmates. The parents of kids in the class also sent lots of goodies in for Kaela on her last day. She will now have tons of stuff to keep her mind preoccupied on the trip to Delaware and during her long stay there. Sarah and I are so grateful for the generosity that people have shown.