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.