Sharing our Story: The Nstar Walk

I hope you enjoy the article I wrote about our experience at the NSTAR walk this year!

Click here to go to the article on Boston Children's Hospital's Thriving Blog.

No news means- NO HOLE!

So we have been very busy!
We brought Lucas in for an Echo on May 30th.
We had a long wait, but Lucas and Lilly were great entertainment. There is a huge train set in the waiting room and they were playing Frozen on the TV so Lilly and Lucas were in heaven.
We went in for the vitals check and the nurse said something that caused us to stumble over ourselves.
"Is his O2 Sat supposed to be 100%?" I stammered in reply, "....if the hole is closed!?"
Bill chimed in "Is it a good read?!?" The nurse assured us that it was a beautiful read and Lucas' O2 Saturation was between 98-100%.

We didn't talk about it really. We just went back to the waiting room for the echo. If the hole was closed, we would know soon. We looked at each other like two school children trying to hide their smiles, afraid to speak, because they would jinx the good outcome that might be coming their way.

I went in with Lucas for the Echo. We watched Sesame Street. Now, whenever we go to Boston two great things happen. Lucas gets to see all the BIG construction sites AND he gets a GIANT cookie.
This is what he thinks Boston is all about. You get a little poked an prodded in between, but mostly it's about cookies and construction. So, back to sesame street. Cookie monster had to be patient. If he was patient and didn't eat his cookie he could have TWO COOKIES! We soared through the echo and next thing we knew Lucas was ADAMANT that he was going to get TWO COOKIES after he saw the doctor and if you asked him what kind he would reply "GIANT ONES!" As a negotiator by profession, I have a soft spot for a kid who makes a good case for himself. Soon we agreed that at the end of the visit two giant cookies would be at Lucas' disposal.

We met with the cardiologist to review the results. In his casual way he nonchalantly confirmed that the Fenestration (The hole they intentionally punched in Lucas' heart in the last surgery) had closed on it's own.
Bill and I just stared at each other. If it didn't close on it's own, he would have needed a cath to close it. They skirted around this item at the last surgery, but we felt it as a possibility looming before us.  A cath is no big deal based on what he has been through. However it is still an overnight, IVs, anesthesia, etc.
Our cardiologist then said "Lucas. has. THE. strongest. heart. I. have. ever. seen. in. a. child. with. hypoplastic left heart syndrome." Ok he didn't pause after every word.. But come on now! Can you believe that! I'll give you a moment to absorb it. To us it means everything. It means a fighting chance. It means we are blessed. It means Lucas has been protected and set apart for something great. It means Lucas' journey has a strong possibility of being a long full life on this earth.

He said that Lucas' next procedure would be a cath when he is around 10 years old. He said to come back for an echo in a year. I'll pause again to let that sink in, too. No invasive procedures are planned on Lucas for the next 7 years. We will not be returning to Boston Children's Hospital for a planned visit until the Spring of 2015.

It's now July.As this news still sunk in we went to the Little Heart's picnic and saw all our wonder friends with half-a-hearts!

 Lucas RAN the walk for Children's hospital. He ran over a mile. I have so much more to say about that day, but I actually was asked to write an article for BCH that should be printed soon so I will share that with you soon. It was an amazing day.

Really I can't wait to tell you about it!

Lucas can now ride his balance bike like a maniac. He rarely has accidents potty training. He is a different kid. He is functioning the same as you or I with only half a heart. He has worked tremendously hard to be ordinary and he just can't help but being extraordinary.

In the meantime, we are fixing up our house, going on vacations, having lots of birthday parties, and absorbing that it's over.

We signed up for 3 surgeries.
That's what they said. We can save your son, but it will be 3 open heart surgeries. He will have the first at only a few days old and the second at only a few months old and the third as a toddler. They didn't have to warn us what that would be like. I remember being shocked seeing pictures of babies post-op. I wanted to vomit. That couldn't be my child. How do you cope with that? What if I'm disgusted? What if I pass out? I can't even stand IVs! But what were our options? Trial by fire or we sentence him to death.
To us there was no other option, but I also couldn't possibly see the other side. To think that just 4 years later it would be over. That plan, that unthinkable course of action would be complete. Now our job is to just to survive but to LIVE! And to that I say, Don't mind if I do!!!

So dear friends, I'm not gonna make any guarantees. You might hear a lot more from me here as we process these past 4 years and delight in the precious gifts we have been given, but you might not. But if you don't, I apologize. I'll be busy living this beautiful life and loving my beautiful gifts to pieces.

With all our Love and Gratitude,

The McGowans

Busy Busy- Picnic, Walk, and Potty Training!

This weekend we will be heading down to Connecticut for the Little Heart's Picnic.
It feels much different this year as we plan to go. Other years we have yearned to be with others having similar experiences to us, others who understand..
This year we feel that we are no longer in the trenches. We are victors.

Lucas runs without seeming to tire. He jumps. He dances. He plays t-ball in the yard. He tells stories. He plays music. (Here's a link of a fun music session with Grey-Grey.)
He has overcome. He has beat the odds and his greatest achievment is being a "regular" little boy.
He is even potty training right now and rocking his Spider man underwear around the house.
We had an evaluation with Boston Children's Hospital recently and they mentioned he was significantly behind in self care. I stopped reading. I didn't want to know their assessment or what made them think that. I just put down the paper and said to myself, "I can push him harder to be more independent and it won't hurt him."  I didn't beat myself up. I didn't question the decisions we have made. I didn't question their assessment or his abilities. I just devoted my day to giving him attention and challenging him. By the end of that DAY he was beginning to dress and undress himself, put his clothes in the laundry basket, helped make dinner, washed his broccoli in the sink, made his own peanut butter and honey sandwich, and helped clean up his room and the kitchen.
Now that he is more comfortable taking off his pants we decided to try potty training. It is a challenge with him being on a diuretic and laxatives, but he is doing great for just starting out.

Bill and I even went away for memorial day weekend BY OURSELVES!
Yes, we left out instructions and all his meds, but we didn't even call to check in for the first couple days.

Our theme songs for the weekend ended up being Bloom by Moriah Peters and Joy Parade by Lennon and Maisy. We are in recovery. Recovery from the grief, loss, pain, frustrations, and the loss of control of our lives. And even more powerfully, we are thankful- overwhelmingly thankful.

I feel like a person who had to become crippled to realize they were capable of anything.

So that is my update.

The walk is in 11 days if you would like to support our team we would be very grateful!
I just got a request to post Lucas' story and poster at the walk so that will be fun.

Here is our Team Page.
Here is Bill's Page  (Please help him meet his fundraising minimum of $200!)
Here is my page

Thank you for your support!!

NSTAR Walk and an update!

We are doing the NSTAR walk to raise funds for Boston Children's Hospital again this year!
This year we are teaming up with "Super Daniel's" family again. Daniel has the same Congenital Heart Defect as Lucas and they are 6 months apart in age. They even have the same surgeon!
Here they are last year! They have now learned after a heart picnic, a walk, and a fundraiser together that their moms both bring trucks and cars to all functions. Every time they know they will see each other they both get excited to share their toys.

Last year we had so much fun together that we wanted to join forces again. So this year our team is called Team Lionhearted for both of these amazing fighters!
We also have some additional extended family joining our team! My cousins Tyler and Amber just spent about a month at Boston Children's as their newborn "Lucky Lucy Goosie" battled RSV. They would like to walk to say thank you to Children's for fighting for their own little warrior.

Last year we raised over $9K for Boston Childrens' Hospital! That is just amazing. We are so grateful to you all for supporting us!
Here is the Team Lionhearted Page
From there you can check out our team roster and support anyone you wish from the list!
Please feel free to pass our page on to you office, church, friends, and neighbors to help us share our stories and support this amazing hospital.
Keep in mind that all the adults who are walking must raise a minimum of $200. So Lucas and Lilly don't need donations.
Here is my personal page that shares the reason we are walking.



In other news, I haven't given a REAL update since DECEMBER!

Lucas no longer wakes up at 5am (typically) or passes out in the car. He no longer complains at school to get attention.
I regularly receive glowing reports from the school staff and he is enrolled in Tues/ Thurs classes again for next year!
We have made minor accommodations as he adjusted to school. We got him a medical id bracelet per the school's request. We also got him a backpack with a strap across the chest that makes it easier for him to wear his book bag into school. We also built him a tent for his bed to keep him safe from the "monsters." However, once we adapted to these slight needs he has continued to increase daily in his strength, stamina, and independence.

 The only medical thing we are dealing with right now is his stomach. He has some issues caused by the surgeries. We are trying to find a balance of medicines and it has been a challenge. However, I laughed with Bill yesterday as I pointed out that the same day I was crying that he wasn't eating enough, wasn't getting enough nutrition, I didn't know what to do, and how can we help him, etc. I was also asking if we could use the clothing budget to get him some new clothes, because his 3Ts are all too small. That would mean he is still around the 25%ile which is where he has been for the past couple years. That is by my "Old Navy growth curve" though so we haven't actually brought him in to be checked formally. 

This weekend he got a bad virus and turned blue with a high fever and had some labored breathing, but after a saline nebulizer treatment and piggy backing ibuprofen and Tylenol I put him to bed with Sats in the 90s and rosy cheeks. The previous morning he had come into our bedroom saying, "Mommy I have the 'bless yous' can you fix me?" I always explain to him why we are taking his temperature, why he has to take the yucky red medicine, and I always ask if he wants to take his nebulizer. These things help him to feel in control and unafraid even when things get a little bit more medical. We have an echo coming up and we recently did a developmental evaluation with BCH, but there isn't anything big on our horizon right now with Lucas so we are just enjoying him and recovering from the roller coaster our lives had been.

I have found a child care provider for the afternoons who helps out with the kids while I work. I also started playing softball on an all women's 30+ year old team. It has been so fun. I love seeing Lilly trying to play t-ball and Lucas asking to play catch or throw the ball so they can be like their mommy.

Bill has been working on our house and it is really coming together. It is truly beautiful and it has been nice to focus on every day things like house work and yard work again.

We also for the first time in 4 years don't have to use our vacations for surgeries or maternity leave! So we are going to the cape for 2 weeks this summer and Bill and I are going away (BY OURSELVES) to Bar Harbor for Memorial Day weekend. I can't wait. Even I will admit these vacations are well deserved.

Lilly is as Lucas and I call her "a MANIAC." She climbs up anything and everything. She is completely fearless and determined. I can't help but think of how well they compliment each other as siblings. She loves books and dressing up too. I can't believe she is only 1 years old. I feel like she was never actually a baby. She runs around the house saying her 4 favorite words: "DA-DDY", "THANK-YOU", "GO!", and "HI!"

Hope you can support us in the walk! We are so excited for a fun filled summer and some much needed breaks. We're even going on a date tonight!

All our love,
the McGowans

Sharing our Story

This is the wall to a conference room in Boston Children's Hospital along with this story:

“A Devastating Diagnosis…A Reason for Hope”

Lucas, age 3

During a routine ultrasound, Becky and Bill received devastating news.  Their unborn son, Lucas, had hypoplastic left heart syndrome – only half of his heart was working. 

When Becky and Bill were told by their local doctors that they didn’t think they could save Lucas, they searched relentlessly for a second opinion.  They found Boston Children’s Hospital’s world-renowned cardiology program where they were given hope.

Immediately after he was born, Lucas had his first open-heart surgery – part of a procedure that would require two additional surgeries as Lucas grew.  Just before his third birthday, Lucas had his final surgery.

Today he’s a healthy, happy preschooler.

We are also attending a Dance Marathon to raise funds for BCH at Emmanuel College on Sunday as Special guests. There should be 250-500 students present. They are "Standing for those who can't" and will be active at the event from 10pm- 10am. We will be arriving at 8am and will participate in some of the kid friendly activities as well as cutting off the hospital bracelets the students will be wearing.

I have created a Power Point slide show that I hope to convert to a video so I can share it with you.

I thought I would share the story I will be sharing at the event. Please excuse the horrible grammar, punctuation, etc. It is just a speech so I wasn't to careful. 

"Stand for those who Can't" 

by Rebekah McGowan

We are so happy to be here with all of you today as you Stand for those who Can’t in support of Boston Children’s Hospital.

I am so proud to introduce you to our miracle and our warrior, Lucas.

When Bill and I planned to start our family we never planned for this journey. We never imagined that a routine ultrasound that was intended in our minds to confirm that we were having a little boy would rock our worlds forever. That was the day we found out that miracle inside of me was in desperate need of help. He was diagnosed in utero with Hypoplastic Left Heart Syndrome which basically meant he only has half a heart. This also meant he had 0% chance of survival when he came into this world without massive medical intervention by some of the most skilled surgeons and medical staff in the world. This fact brought us to the doors of Boston Children’s Hospital.  

As I thought back over the last 3 years of our lives and how to share this journey with you, the image of standing for those who can’t kept coming to mind.

I thought of myself the day I received Lucas’ diagnosis holding my husband’s hand as though he was holding all the broken pieces of me together.

I thought of my husband and I as we heard this news and knew the only option for us was to fight for our child’s life with every resource available to us.

I thought of the doctors, surgeons, and medical staff at Boston Children’s who so willingly answered our call to fight for Lucas’ life.

Then I thought of Lucas. I thought of his birth and the organized chaos that ensued as they whisked him from me to the NICU to immediately stabilize him. I thought of his perfect helpless little body in my arms as I passed him to the medical staff for his first of 3 open heart surgeries at only 4 days old. 

I thought of walking into the CICU after close to 10 hours of waiting to see his body now broken, and sliced with tubes, wires, and needles in what seemed to be every available surface of his body.

I thought of the  CICU nurses who feverishly worked to pull medications and lines and tubes while carefully maintaining his stability. It was such a delicate and yet frantic dance to continue to fight for his life. 

I thought of the nurse practitioner who held me in her arms as I sobbed when we found out he needed to be on a special formula rather than my own milk.

I thought of the dear nursing assistant who got him to eat from a bottle after days of my own failures.

Every person involved in Lucas’ care was fighting for him. Fighting for his survival.

We were able to take him home 1 month later and we had to tirelessly keep logs of what he ate and what he weighed. There were constant check ins with our NPs and VNAs. He was enrolled in Early intervention and was visited regularly by their therapists. But Lucas was surviving. We brought him in to the hospital again for his second open heart surgery at 6 months. Again the entire staff fought for him through some terrifying episodes, as he spat out his ventilator and began to code only one day post op. He ended up going back to the OR for a chest wash out as well do to clotting and fluid.  It felt like a nightmare. It felt like organized chaos again, but everyone worked tirelessly and we went home again one month later.

There were no more logs, no more VNAs, no more check ins with the NPs. He was soon sitting up and soon crawling and talking and eventually walking and running. He wasn’t just surviving. He was THRIVING. We had 2 and a half years without surgeries and we happily welcomed Lilly into our family.

Then shortly before his 3^rd birthday, Lucas had his third and final planned surgery. He was only in the CICU for a day or so and then we quickly moved through his recovery. He was very aware of what was happening and it broke our hearts to have him share how scared he was and how difficult it was for him, but the entire staff was amazing in letting us establish a safe routine for him with frequent visits to the play room and park. We were home in 8 days, but were soon readmitted for some fluid issues. We ended up finally going home about a month after his surgery date. Soon after we had his 3^rd birthday party and he started preschool. Each day it seemed that he got stronger, braver, faster, and smarter.  No one other than his teachers in his preschool class even knows that he has a heart condition. He is a survivor. He is a miracle, but he would not be here without all the hundreds of faces who stood for him as you stand here today.  Thank you.

Giving Back

Lucas is now in Preschool. And he is learning the system quickly.
Apparently he gets lots of attention for saying he is "hot, sick, cold, tired, feels yucky, etc." 
So basically he is a three year old. 
We just had an extensive conversation on who is a boy and who is a girl after he called Lilly a "good little boy" for the 10th time. In the end he decided workshops, wood, tools, daddy, Lucas, etc. were all "good little boys." 

Some days I can't stop crying with joy as he runs around our kitchen island seeming to never tire as he sings and drags furniture behind him. I have to stop myself when I hear him playing with bigger and stronger kids. My instinct is "He can't keep up with them. He can't do that. He'll get hurt." Then I get to remind myself. HE CAN. So there he is. Running up and down the stairs at my brother's house. Bossing his cousins around and screaming at the top of his lungs in pure childhood wreck-less abandon. Yes, he passes out in the car and may wake up at 5 AM thirsty and hungry, but he CAN. Can't has become so much less a part of my vocabulary. He can jump too. Miracles. I am so grateful.

I have also realized that this journey was a long haul. It was difficult and it is difficult. I have spent 3 years 100% focused on one person's well being and survival. I am so very joyous and grateful, but I am licking my wounds as well. I have been going to counseling and I'm so grateful for the opportunity. I have been reaching out to friends and family and letting them know that under all my joy I have struggled with depression through this. This is not a perfect journey. I am not perfect. I am not better than you. I am not braver than you. I am not Godlier than you. I am broken. I am battered. I was simply put into a fire and I came out on the other side. Though nearly every moment I cry out in thanks to God I struggle to give him my undivided attention. Though scripture has given me so much strength, I struggle with daily devotionals. Though friends and family have been nothing but supportive, I struggle being relational. 


I want to share this because if you have to bear the unthinkable some day or if you currently are or already have. I never want you to think you are weak. We are ALL weak. We just cope differently. Some of us pour ourselves into simple tasks like house work, etc. Others are overwhelmed by simple tasks and pour ourselves into family, etc. But we all struggle. We are all weak. We all need support. And if you think someone else is perfect you are doing them an injustice. You are giving yourself an excuse to not support them. I don't know what I would do without the support that was given to me and because it impacted me so much I am extremely driven to give others that same support.

If you find yourself getting bogged down this holiday with all the "I want" "me" "stuff," etc. I have some opportunities for you!

You can "Adopt a Family" through Boston Children's Hospital.

The holiday season is quickly approaching and the Center for Families is once again looking for your help with our Adopt a Family program. Our patients and families’ needs are always great, and never more so than during the holidays.

For those of you who are interested, we are offering two ways to support our families this year.

·         Gift cards empower families to choose just what they want or need, and allow parents to provide for their families and enjoy the pleasure of shopping for their family.
o    In order to make the gift cards as personalized as possible, we will share with you some information about your adopted family, including their store preferences.
o    We suggest a gift card denomination of $50 for each member of your adopted family.
o    If you are able to provide additional support, please buy a gift card to cover the costs of grocery shopping for one holiday meal (suggested denomination of $150).
o    In general, the types of cards that are helpful include Stop & Shop, Shaw’s, Market Basket, CVS/Walgreens, Target, Wal-Mart, Kohl’s and Toys R Us. Please remember to indicate the amount on each card.
o    To provide enough time for families to shop for the holiday season we are asking that all gift card donations be made by December 6, 2013.

·         For outpatient families who visit the hospital multiple times each month, the cost of parking can be overwhelming. Parking vouchers, which cost $10 each, can help ease some of the financial burden for families during the year.
o    Once again this year the Parking Office has agreed to match your donation.
o    If you are interested, please write a check payable to Boston Children’s Hospital and deliver it to the Center for Families labeled “Adopt a Family Parking Program.”
o    Alternatively, you can go to the Parking Office directly, and let them know that your check is for Adopt a Family.
o    We will distribute parking vouchers to families in need, working in collaboration with Social Work and the Outpatient Parking Program.
o    Donations for outpatient parking can be made up until January 7, 2014.

As you prepare for your own celebrations, please extend the spirit of giving to our patients and their families. Last year we were able to adopt 275 families and provide more than 1,500 parking vouchers for outpatient families in need. Your generosity and thoughtfulness will be deeply appreciated by our families, who now more than ever need a helping hand to bring a little light into the holidays.

If you are interested in adopting a Boston Children’s family for the holiday season, please contact us at adoptafamily@childrens.harvard.edu  or call the Center for Families at (617) 355-6279, with the number of family members you would like to support and we will send you the family profile.

You can also help me send Christmas Care packages to the Psych Unit at Boston Children's Hospital!

This unit has the greatest needs currently. These children will not be featured in the news or in the newspaper. Many are in foster programs and don't have family support. This unit does not have Child Life as many of the other units at Boston Children's do. The resource coordinator is forced to scrounge around the hospital for supplies for these kids.

 The patients range from 8-18  (most patients are 12-13).

There are 16 bed spaces that are almost always full.

Ideas for a gift basket or a donation :

·         ITunes gift cards

·         Stuffed animals

·         Play-doh

·         Stress balls

·         Journals (composition notebooks, Not ones with a spiral bound)

·         Lotions

·         Hats and gloves

·         Markers, crayons, colored pencils

·         Scultpy clay

·         Shrinky dink film

·         Cards

·         Games

·         Books

·         DVD’s

Please don't include anything sharp or anything long (no scarves, etc.)

For messages please don't include "Get Well" or any references to food or exercise.

If you would like to help me put these packages together please message me at mcgowan.rebekah@gmail.com!

Thank you always for your love and support!

 

Love,
Becky

Goodbyes and New Adventures

With each change of season there is some loss. Loss of the familiar and the old routines. On the other side of that loss are new experiences and growth.

We said goodbye this week to two amazing people who have worked with Lucas in our home for almost a year and a half through the Early Intervention program. They have held our hands through this journey and laughed with me and let me cry and cry and cry and cry with them. I really don't know what I would have done without this amazing program that not only is designed to support the child, but also the whole family.
Basically to say mom crying is completely allowed and not frowned upon which is a good thing since I can typically hold it together in public, but if you come to my messy house once a week on a schedule you are bound to see some of my lows first hand. I can't believe the progress he's made with their amazing staff and it was such an enjoyable experience and hard to say goodbye for sure!

But with those Goodbyes come new beginnings. Lucas is turning 3 on monday. 3 years old! 3 years! We have had 3 years of miracles. Tuesday is his first day of Preschool. Wednesday is his first dentist appt. He is on his maintenance dose of Lasix (15mg 2x a day) and our next x-ray is in 3 weeks.

AND

Lilly slept until 4am last night....

That means I got 6 hours of sleep IN A ROW! And she went back down until 7:30 AM! 

Can I get an AMEN!!!

So basically the marathon is almost over and we will be adjusting to a regular and scheduled work out routine. 

This last leg of the marathon has consisted of:

Enrolling Lucas in the MedicAlert program and getting him an ID bracelet

4 meetings with his school nurse to go over plans and create paperwork: Emergency plans, etc.

Constant texting/ e-mailing with our NP at Children's as we wean of meds and get signed releases from the Cardiologist.

Coordination with the Pediatrician to get orders for nearly weekly follow-up x-rays and labs.

Coordination with the dentist to get antibiotics for his dental appt. 

And probably other things I can't think of now. 

Meanwhile Lucas is getting stronger every day. 

He marches and runs around the house singing "We are the Dinosaurs!" 

He is interested in preschool games like Memory and hide and seek.

This week he also began walking up and down our front step again! He had regressed to crawling or holding someone's hand after the surgery. He has also been doing a squat walk for as long as I can remember. We recently theorized this was to conserve heart energy through limiting blood circulation. This appears to be the case because this week he began bending over at his waist to drive cars on the floor rather than crouching for the first time in his life!

Lilly is getting stronger too....

And he is also getting cuter:

6 weeks Post-Op

As you can see, Lucas is doing pretty well. We have been steadily working on weaning his medications and are now down to 20mg 2x a day of Lasix. So we have successfully weaned 38 mg of Lasix over the past weeks. We also were able to drop his Potassium supplements.

So now for the Good, the Great, and the Heartwrenching:

The Good is that as we have weaned down the Lasix we are starting to see the new Lucas. He has about 3x the endurance that he had prior to surgery. His appetite is more steady as well. His language has grown leaps and bounds. He can now sing songs remembering the tunes and lyrics and he is excelling at taking information and repeating it, but making it is his own. This is the new Lucas. The Lucas who is ready for Preschool. The Lucas who truly has friends who he enjoys playing with, hugging, kissing, and even sharing with. The Lucas who talks about his feelings, his fears, and his hopes for "tomorrow." The Lucas who can listen even when he is very focused on the project or play at hand. The Lucas who has extremely elaborate imaginative play that incorporates real life, favorite shows and books, and fantasy. It's like he went to developmental boot camp for a few weeks rather than having major surgery.

The Great: We had his Preschool Orientation and finally his Preschool Observations. We also had an in home visit with a physical therapist. We learned some valuable information. Lucas' comfort zone is in a hunched/ crouched position. We call it the squat walk. The Physical therapist explained that it is a solution he created to address two problems. The first is so his heart doesn't have to work as hard to pump blood to his extremities. The second is because of general weakness in his core.
We all agreed he would benefit from therapy and our fear was that if Preschool didn't feel that these issues inhibited his ability to attend a school day we would have to take him to PT elsewhere, possibly in a hospital setting.
The Physical Therapist at Preschool let me know after observations that it looked like she and Lucas would be spending a lot of time together. She made it pretty clear he was going to qualify for services with the school. This means he will be receiving PT during his normal school day in the school's gross motor room. We couldn't be happier. This is a huge answer to a prayer that we have been praying for at least 6 months.

The Heartwrenching: For the time being at least, Lucas vividly rememebers the hospital and his surgies. He has clearly expressed to me that he has nightmares about getting his blood drawn.
Last night he woke up in the middle of the night and told me about his dream. He said he was in the hospital and everyone was getting hurt and he had to see Jim (that is referring to getting his blood drawn.) With each memory or recounting of his experience he recites that "sometimes it happens." "sometimes bad things happen." "sometimes owies happen." "I ok." "It's ok." etc.
It is still heart wrenching that a few times a week he wakes in the night from the nightmares.
We have decided we need to be very conscious of talking about the hospital or his surgery or even his condition in front of him. We don't want to constantly refer to his heart when introducing him as he begins to form his identity and define himself and his experiences. If he brings it up though, we will let him freely talk about it. There are no right answers, but I feel that God is leading me to confidently navigate this territory. I feel confident that I know Lucas. I know how he thinks. I know what he needs. I know how to make him feel calm and comforted and I know how to give him the tools to comfort himself.

So that's where we are: No more physical restrictions. Still slowly working on weaning his medications. Settling into some sort of normalcy. Getting ready for Preschool.

P.S. Lilly is insane and has mastered sitting, crawling, and is now pulling herself up to standing. She is only 7 months old and is already in 18 month clothes. She loves everyone, but no one more than her brother. Her only vice is sleep and we began the process of letting her cry it out last night with a fairly successful night. There are no words to thank you all for you care and support in this process.
I am beyond exhausted, burnt out, and ready for Fall. We are so excited to soon be celebrating Lucas' 3rd birthday. 3 years. 3 years of miracles.