We had a delightful Christmas home with Parker.  What a blessing to be home and together as a family.  We put Parker in his high chair where he was up and could see all of the festivities.  The kids were so cute and thoughtful.  After they had opened all of the surprises in their stockings, almost as one they went over to Parker's stocking and brought all of his toys and stocking gifts over to him in his high chair and gave him his gifts.  He was happy as a clam to watch and chew on all of his delightful vibrating toys.

I have been a little discouraged with how much he regressed with the g-tube surgery.  It was 3 weeks ago. I am finally starting to feel better, though. This past week he is starting to get back to where he was before the surgery and the past few days he has started to recover new ground in some areas.  Today in church he kept dropping a toy over the bench for the kind person in front of us to pick up.  I realized "It's a game!!! He has finally gotten to the stage of dropping toys on purpose for a game!!!" It is amazing the things you are grateful for and don't take for granted the second time around.

Today I was working on him with rolling on the ground. I take his ankles and flip him to his belly to see what he does and today he totally got his left arm out from being pinned.  We are still working on that right hand.  He is moving it more, but just does not have the strength in it yet.  He can now feed himself with his left and pick up pieces of bread, cheerios and M&Ms in his left fingers and put them in his mouth.  That is huge!

We think his vision is improving as well.  You can't necessarily see it from the pictures I've posted, but his eyes have not been going in the same direction since his accident and the swelling.  They are starting to come together more and more now and his vision is really improving.  He used to not "look" at all and would reach for things only by feeling them and following our arm to get to our hand.  Now if I hold something out in front of him he will reach out and grab it without feeling for it.  He will hold our gaze for longer and just "look" soooooo much better.  We have an appointment to follow up with ophthalmology in a couple of months. His eyes should be fine, it is just the processing in the brain that needs to reconnect.

Please continue to pray that his right side will improve.  It is very slowly improving, but slowly.  It is very much a few steps forward and a few steps back.  Some days he will put weight on it, then the next he won't.  The very first game I played with his left hand in the PICU was to tickle his tummy and say "Come get me" and he would move his left hand to come find my hand by feel.  He became a total pro at that and his dexterity in his left has improved so much.  This week I pinned his left arm and played that game with his right and for the first time he moved his right hand towards me, although he couldn't make it all the way to grab my hand, he got so close.  That is HUGE!!!  Also, normally I have to pry his right hand open to put a toy in it before he clenches is again.  Today I put a toy in his right and he grasped it himself.  These are tiny things, but so huge. Please pray that his right  side will continue to awaken and improve.

We meet with the Neurosurgery team in a week to schedule when to put the bone back in.  His head swelled so much with the g-tube surgery I completely understand why they have to have it sunken in as much as possible.  Please pray the swelling will go completely down soon and that there will be no complications with the bone flap surgery.  Please.

It is such a blessing that they were able to get his therapy evaluations done so quickly.  His therapies are already approved and scheduled-even with the holdiays.  Time is of the essence.  He has a window of time to improve as much as possible- which is also why I have been so worried about the regression from the surgery.  After talking to his rehab NP this week I realize that window is bigger than I thought, but it is still sooooooo important he can make those new connections in his brain as much and quickly as possible. Yesterday we went down to Old Town and the Mormon Battalion.  We were talking to one of the missionaries there and she said that she was in a car accident when she was 5.  She had a TBI (Traumatic Brain Injury).  She was in a coma for a few months and then inpatient therapy for 5 more months and now she is doing great.  I am so encouraged by the people I meet that have sustained a TBI and have recovered so fully.  We have a long way to go, but he is on a great trajectory.  Please keep him in your prayers.  It means so much.

Tonight I am so grateful. We were watching a movie with the kids and Devin made a noise and Parker busted up laughing. Over and over. Devin played peekaboo with him and later Kelsi did, too. He was so slap happy and I loved every second.

Parker was so happy before his accident. He was always smiling and laughing and that is what I wanted back most. By the time I grabbed my camera tonight he was pretty tired so not laughing nearly as much, but I forever want to remember that first moment when he busted up laughing.

I have not written much of late... Oops. We have been home almost one week. Several have asked how we are doing...and we just... are. :) It is hard to explain. It is so nice to be home and be together. Parts seen much easier, others have been harder. Some have been pretty entertaining like me spraying boost formula all over the wall and mirror within minutes of getting home. Some have been a bit scary like when his g tube became clogged outside at the girl's piano recital and he was crying and coughing and crying more and wouldn't settle down. Some have been great like when he slept 12 hours one night. I very much feel like I have a newborn and am purely amazed I get anywhere... let alone on time. We have spent a lot of time in the car going to therapies, evaluations and doctors apts.

Thank you to so many angels that have helped this week. Sweet people brought meals, sneaky ladies snuck in and cleaned my house the day before we came home, a good friend brought by a ton of paper plates, cups, bowls and silverware, play dates for my kids, carpools, picking up milk, standing in the long line at Costco to pick up pictures for me, Darrell put ALL the kids to bed one night so I could go to a girls night, phone calls, wonderful visits... And so much more. I am pretty spoiled rotten.

And I am so grateful.

It has been good. So good to be home. We have been living hour by hour. And that is okay. Eventually this will become the new normal, and in the meantime we are together and it is so good to be home.

And my mom and dad come this weekend. :)

Thank you for your prayers through this transition. We have truly felt surrounded by angels and so buoyed up. Thank you.

We learned from the hospital staff that stuffed animals are perfect for positioning.

A couple of firsts I want to be sure to document today. He ate two full meals by mouth instead of his feeds!

He woke up giggling all morning. The therapist accidentally knocked his stroller against the crib and he cracked up. She did it again and he cracked up again. I am getting my happy little boy back!!!

Happy dreams.

So I am really nervous about bringing Parker home and it has really caused me to reflect on why. I am nervous for lack of sleep, feeding, meds, being on my own, I'm still sick, therapies... But I know we will be just fine. Darrell keeps assuring me it will be just like bringing home a newborn. 

There is so much, but I think I am most nervous to face the world again. I've been pretty selective about what pictures I post or what I say and we've been in our own little world at the hospital. After Friday I won't be.

I just want to say how thankful I have been for all of you wonderful friends on Facebook. It has made such a difference to be able to update all at once and have soooooooo much support. Thank you. It has meant the world to us.

Parker needs another CT for something today. Please pray he will hold still enough and he won't have to be sedated and that whatever it is will be okay and not delay us going home tomorrow. I don't want to tell my 4 year old were not coming home.

Update: He was still and did not need sedation! His nurse just brought me Campbell's chicken noodle soup. How did I not know they had this before??? His nurses are so kind and sweet to both of us. I could not have asked for better nurses. I refuse to pack up my room before I know when we are actually going home. We are still waiting for the results.

All weekend we thought they were sending us home Monday so I have already sent a bunch of stuff home so there is not that much.

I was looking through my phone and deleting multiples of pictures and I came across this gem. I sure love this little guy soooooooo much.

It looks like Parker will be coming home Thursday or Friday. It has been really confusing- everyone had different opinions- whether the nurse or therapists or doctors... And poor Darrell was here on Friday while I was home sick and had no clue what was going on and everyone kept telling him different things and I had NO voice... But all is lined up now and we can move forward with that date.

I am so relieved. At one point we thought they were sending us home today and I felt a little kicked out because there is still so much to do and learn with the G tube, but that was just a misunderstanding and all is well.

So one little known job position that I am forever grateful for is the case manager at the hospital. Ours is amazing! She coordinated everything with the insurance all along giving then weekly updates so they would authorize more therapy. Today she handed me a paper with all of my follow up apts with my pediatrician, Opthalmology, neurosurgery and before we leave that list will include any out patient therapies as well as all of my follow up apts with rehab for the next several months. Plus she takes care of the referral for CCS plus so much more. Wow. I really really appreciate her. I appreciate this whole rehab team. They really are a team and they are amazing.

A bunch of firsts today! Parker officially no longer has a PICC line! They removed it today. He is up to full continuous feeds on his g tube and he also ate food by mouth for the first time today. He ate real banana and he loved it! He even took the pieces out of my hands and put it in his own mouth. That is huge. Today is also his first since surgery he has not had any pain meds including ibuprofen. We have a date to go home on Thursday or Friday.

Parker let me sit him up for the first time today since getting the G tube! his tummy has been a little sensitive. He also was more willing to be moved around- from the bed to the floor, stroller, or my lap. Poor kid. This surgery was rough on him. It is soooooooo nice that he is getting back to his new normal self.

On the bright side, when he looks at me, his gaze is clear and the most lucid I have seen since his accident. I have always loved his blue eyes, but I have fallen head over heals in love with them again this week.

He wore real clothes again today, he was completely off his IV all day, we learned how to feed, clean the bag, give meds and vent his tube. We also learned all about what to do if the g tube falls out, and how to clean and care for it.

Parker and I are both on the up and up. My sore throat is so much better and it is finally moving into the cough phase... Which is both good and bad. Weird to be grateful for an incessant cough, but it is progressing. I am just so grateful it no longer KILLS my throat to cough. I really really hope the rest of the family does not get it. Darrell sounds like he might be on the way down and I know my father in law caught something...

Hopefully it is just a normal cold virus that had a personal vendetta against me instead of being a super charged mutant with a singular mission to take down as many Swensons and innocent bystanders as possible..

Hopefully...

Parker is now 4 days out of surgery. He is still a little sore, but doing better. He is still on some pain medicine, but mostly off the morphine now. He was able to go to most of his therapies today. Mainly I peppered the therapists with questions and wrote down tons of ideas and suggestions of what we can do with him in the transition time from inpatient to out patient. He is still a little sensitive and sleepy for full therapy.

I have been really sick with a bad sore throat all week which has really put a damper on things. Mainly I am so afraid of him catching it. Or the kids or my husband or in-laws or nurses... I so appreciate that his doctor did not send me home. He told me to wash my hands constantly and wear a mask which I have. I wanted nothing more than to snuggle with my baby after his surgery. They ended up swabbing us both for strep (I finally went home thursday for a doctor appt) and they were both negative. So far he is thankfully not sick. Later in the week my in-laws came to stay with him and my husband so I went home for a couple of days. I had to be creative, though, since talking hurt my throat, plus even whispering made me cough and that KILLED my throat. My kids were so sweet and were so kind and considerate. They became much better listeners since I could only whisper or mime. At first they were ignoring me, but when they saw how bad it hurt when I had to keep asking them, they were so thoughtful and sweet. :) There is some silver lining, right?

This morning they let me sleep in and they worked together and made pancakes, eggs, chocolate milk and cheese crisps. Complete with a secret ingredient! It was delicious!

I was trying to figure it the purpose of getting so sick this week of all weeks when I so wanted to be taking care of Parker after surgery and getting everything in order for him to come home. I feel like this whole experience has been to teach me that sometimes I need to rely on others, which is so hard for me. Yet it is so important that we rely on the Lord and others sometimes. Sure it is important to be self sufficient, but sometimes we have the opportunity to serve, and sometimes we have to allow ourselves be served. With that, I am soooooooo grateful for all those that have done so much to serve and think of our family, no matter how big or small. Thank you.

And I had enough voice today to go on a date with my hubby to Red Lobster for his birthday. We went during Parker's nap at lunchtime today. We both needed that so badly today. We can do this.

I am thankful for warm and cuddly long sleeved shirts. I am thankful for patio tables and umbrellas so that I can eat my lunch outside and enjoy the drizzling rain without making Parker smell my food. I am thankful the outpatient pharmacy stocks cough syrup and throat lozenges with out jacking up the prices. I am thankful for hot soup for lunch. I am thankful for a snuggly baby who will let me hold him as much as I want. I am thankful for a hot bath during his nap. I am thankful for a sweet nurse who's flight was delayed, but instead of calling out from work, she took a red eye hoping Parker would be her patient, knowing he was just one day out of surgery. That meant so much to me. I am thankful for hand sanitizer and face masks so that I can snuggle my little guy. I am thankful for a thoughtful husband who sent me home to sleep in my own bed so that I can get better. I am thankful for a delicious omelet and French toast sticks on a hospital tray so that I could eat breakfast with my husband on his birthday. I am thankful for cell phones and texting when I've lost my voice. I am thankful for sweet kids that give me hugs and kisses before I left this morning. I am thankful for the wonderful gifts that were left on my doorstep and the delightfully sweet Christmas story we read by candlelight last night. I am thankful for patient grandparents that hold down the fort. I am thankful for parents and in laws who have done so much for our family. I am thankful for understanding therapists and nurses. I am thankful for a good book. I am thankful for morphine and IVs. I am thankful for cell phones so that I can feel close to my husband even though we barely get to see each other. I am thankful for a birthday dinner date planned this weekend.  I am thankful I get to snuggle my baby all day long. I am thankful we are going home next week.

It's funny how sometimes Heavenly Father answers our prayers in the most random ways. Tomorrow Parker is going into surgery to get a G tube. We have vacillated and prayed about it for quite a while if this is best. Then a couple of weeks ago he had two nights without IV fluids. The first was planned, the second was not. Both mornings he woke up very dehydrated. This showed us that yes, the G tube is very important. I finally felt at peace about it.

The other variable is whether or not they are going to do a fundoplication. That is where they do a procedure that makes it very difficult for the patient to throw up or have reflux. Parker had been throwing up a lot, but he is also protecting his airway, so we didn't know what to do. Then last Sunday we took him home on a pass. Just as I was putting him in the car to take him back to the hospital that evening, he threw up and aspirated a little bit. That has been one of our worries all along. What if he aspirates??? The fundo prevents aspiration, but it is somewhat permanent... So do we do it or not? How long will he have the g tube? How long will he keep throwing up?

After aspirating last week we thought for sure yes. Then this week he did not throw up at all. Did he grow out of it? He ate so well today and I was thinking back and forth again. (I appreciate wonderful nurses that day exactly what I need to hear.) Anyway, he ate an amazing dinner, was playing on the floor with toys and chewing his fingers. He keeps gagging himself and sure enough he gagged himself hard enough to throw up. And that was my answer. Yes. The fundo will be is right. Yes the fundo will give you piece of mind that he can't aspirate. Yes he will grow out of it and it will stretch. Yes he will be just fine.

That is my opinion. We will see what the surgeon decides tomorrow. He does a wonderful job and I trust his expertise and opinion.