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.

Thanks for all those that have been praying about Parker's right side waking up and engaging. Friday he had some breakthroughs with his right side.  He lifted his right hand, then carefully moved it over and deliberately pushed a button!  Later that day, he lifted his right arm above his shoulder height to grab on to a box to hold on to!!! He is grasping better with his right and beginning to bring toys to his mouth with his right, especially if he is laying on his side.  I am so grateful to see that right side wake up and begin functioning.  I keep telling him how handy that right hand is and that he really should try using it.

I am a little anxious this week.  He is having the surgery Tuesday to put in a g-tube as well as get the CT scan to start the process of his bone flap (putting the skull bone back in).  I really wish the bone flap surgery just happened to be before Dec. 31, but we can't have everything. :)  We really have been so blessed- I have nothing to complain about.  Thank you soooooooo much to the many kind and generous souls who have helped relieved so much stress and heartache with the financial side of things. You know who you are.  Thank you Thank you.  We have been so kindly blessed. With the bone flap. it takes at least 6 weeks after the CT scan to make the prosthesis.  His swelling has come down a ton, but it is not there yet.

I am also anxious because my in laws have to go home at the end of the week.  I am so eternally grateful to my in-laws and my parents for taking turns turning their lives upside down and completely on hold to come take care of my kids, me and my husband, my home and keep life as normal as possible.  My kids are handling the stress of only one parent and sometimes no parents and their little brother in the hospital so well. I know it is in huge part because of their wonderful grandparents. And I include my Dad in this, too, because even though he could not come down, he did great without my Mom for a whole month being by himself just shortly out of a knee replacement surgery.  I so appreciate the time of these wonderful grandparents that have spent so much time playing with my kids, spending time with them, making snacks when they get home from school, listening to them, helping with homework, encouraging independence, practicing the piano, cooking, cleaning, convincing my kids to clean up after themselves, making breakfast, school lunches and dinner, helping them with chores, staying with Parker so I can have a break, signing to him, holding him, feeding him, caring for him, taking care of me, listening, loving and giving much needed back rubs.  For sending me to bed and cleaning the kitchen without me.  Thanks to all who have prayed for Parker and prayed for our family.  We have felt so buoyed up and felt our burdens lightened.  I have no idea how people could possibly go through this without so much family, friend, church, neighbor and spiritual support.  We are really so blessed because of you.  Thank you.

Thanksgiving

We had a delightful Thanksgiving. I went home Wed night and took turns with the kids baking cookies with grandma, cleaning to get ready for Thanksgiving, or making a dish. It was so nice to spend time with my kids and be home to get ready. I had had a great day with Parker, but all day I had felt like I was nesting. I so wanted to be home to cook and clean with my kids. Darrell came to the hospital after work to stay the night so I could go home. Then he fed Parker breakfast the next morning and got him all ready to come home.

It was so delightful to have him home. I am so glad they do passes because it enables us to get used to the adjustments and ease into the transition. He came home last Sunday and it was great, but also some things made it stressful like he didn't nap well and he threw up just as I was trying to put him in the car to go back to the hospital. This time was much better and much less eventful. He just fit right back in. We took some pictures, played in the sandbox, rolled on the floor, played with toys, took a nap, played games with the older kids during nap time, ate a delicious dinner, Parker loved the pumpkin pie, we played dinner music and decorated the Christmas tree since that was the only day we'd all be together. It was a truly wonderful day. We have soooooooo much to be grateful for.

I was making some paper pumpkins earlier this week and Jessica took some papers and wrote down what she was thankful for. She wrote "I am thankful Parker survived the fall." So am I. So am I. We are so very blessed.

Have I mentioned yet that I am grateful for this little guy? And tonight I get to go home to see my kiddos, make pumpkin pie, clean, set the table and get ready for this little guy to come home for the day tomorrow! Happy Thanksgiving!!!

What fun to read so many great posts about friends and family, cooking, cleaning and pies. My heart is so full of gratitude this year. I am grateful that we got to keep our baby, for our 4 great kids that are handling things so well, for my amazing husband whom I love so much, my Savior and the knowledge of the Gospel, for peace when I am in turmoil, for snuggles and slobbery kisses, for parents and in laws who drop everything to care for my family, home and me, for wonderfultherapists and nurses who care so much, for nice pillows, wonderful friends, chocolate, breakfast, lunch and dinner at the Ronald MacDonald house, a car and good traffic, unlimited ice water, an endless supply of burp clothes, bedding and towels that are freshly laundered and folded, that food service allows me to order all of his meals at the same time, for words like "mama" and "ba ba ba" for ball, that running helps my back feel better, for wonderful cna's that love to fawn all over Parker and get whatever we need, for insurance, and the kindnesses of so many. I could go on, but will spare you.  Suffice it to say, I am soooooooo grateful.

I am realizing the problem with not updating regularly is that then you get grossly behind and it becomes overwhelming... So I will trick myself and say I will only update a little. :)

Parker is doing well! Thank you for all the prayers about his right side. He is now gripping with his right hand and putting some weight on his arm. It comes and goes for sure, but it is much better than it was. Please continue to pay that right side will awaken and become stronger. One of my favorite things he will do is when he is holding a toy with his right hand is he will take his left and help lift the right to bring it to his mouth. Mmmmmm yummy.

Some wonderful improvements this week. He is saying or indicating "more" more consistently- whether saying more, vocalizing, reaching, opening his mouth, or hitting his hands down. He asks for more bubbles, food, bouncing, banana... Friday I was giving him the choice of banana or cracker to eat. He reached for the banana and said "nana!"

He is getting better at "looking" and focusing on things and on us. If we say "look" he will specifically look- which is cool. His eyes are also doing a much better job of aligning and looking in the same direction. Poor kid probably sees double a lot.

He has been working a lot on his sitting balance and he is getting close. It is amazing to think back several weeks ago at how floppy he was and now how well his trunk is doing. His left hand is excellent at "balance response"- or reaching it out to catch himself. The right is getting there, too.

Thursday was the first time he laughed in response to something without tickling!!! Today we were using a vibrator to waken up the right side of his mouth. As cute as his crooked half smile is, we want him to be able to smile with both sides. Today I saw the simple on his right side for the first time in weeks!!!

He likes to chew on toys and play with water. He will be getting some good chew toys for Christmas. He really focuses a lot better and works harder if he has something wonderful to chew on.

Thank you soooooooo much for your prayers. We all feel them so much. So things ebb and flow. Some days he jabbers a bunch. Others he is silent. Some days his right arm is loose and engaged, others it is tight and tonal. Some days he eats great, others he throws up. Overall he is improving everyday... Sometimes baby steps, others huge strides. He works so hard. He is happy, sweet and climbing that mountain.

I have not posted much in the past few days. It had been a bit more up and down this week. Some things have been going great, and others have been some major steps backwards. I know often there are two steps forward and one step back. It feels like this had been 10 steps forward and just two steps back in the grand scheme so I can't complain, but it has still been hard.

I think much of the up and down has been worrying about the transition to go home in a few weeks and the whole g-tube thing. Those that know me well know I have worrying down to a fine art. I don't feel like it is excessive or more than most mother's, but I like to  plan and unknowns make me nervous. And my child is missing his skull bone. And I have 3 other kids at home. And he is not eating or drinking enough. And it's the holidays. And my in-laws have to go home eventually... and.... you get the idea.

Oh and I got less sleep last night which always makes me more emotional. But after having a good cry with the nurse practitioner and a good nap (which the nurse could not wake me up from when I was supposed to give meds and leave for therapy. oops) I am feeling much better. :) One advantage about worrying and planning ahead is that it makes you think of things before and enables you to plan and avert disaster. Yes???

It was good for me to figure out today what I am really worrying about. Parker is not eating well. He was not before and he is eating even less now. Then the whole fluids thing. They purposefully took him off fluids Sat night and Sunday was rough. He wouldn't drink anything and by that night he was dehydrated and lethargic. We gave him lots of fluids that night and I was so thankful for his PICC line. Monday was great. Monday night they got him all ready for bed and set up with his IV fluids.  The next morning I went to get him up and the blankets on top of him were soaked. And under him. And all around him. And there was a tiny bit of dark pee in his diaper. The IV had become disconnected early in the night and ran all over his bed. The poor kid was soaked, cold and dehydrated. This week made me a whole lot more open to the g-tube- for several reasons- but without that PICC line we would have ended up in the ER twice this week. G-tubes are our friends.

So, back to the cry with the nurse practitioner, I was sharing my concerns with Parker eating and she mentioned they are thinking of doing the g-tube earlier. I did not even know that was a possibility. I am so relieved it will not be right before we go home.  Because of our plans for Thanksgiving, we are going to schedule it for the week right after. I feel so good about it.

Before we go home, we can get a "pass" where we can take Parker home from the hospital for the day to try it out and see how things work. Usually they do it on Sunday when they don't have therapy (I love that they don't do therapies on Sunday because they say it's a day of rest both for the therapists and the kids). We are going to get one on Thanksgiving so we will get to bring Parker home for the day!!! I think it will make for a very special holiday and will be so good for the kids to have both their parents home and their baby brother.

So the surgery will be the week after instead of right before we come home. It will extend his stay a bit, but that is not a bad thing since he will continue getting therapies. And it gives me more time to adjust to the g-tube instead of doing it RIGHT before we go home. I really feel good about it. Thanks to all of my wonderful sweet friends who have told me how wonderful g-tubes are and how much stress they relieve. We can use some stress relief. :)

Another thing I've been worrying about is bringing him home without a skull bone. That's understandable, right? Apparently it takes 6-8 weeks to make a prosthesis and they have not even imaged him yet. We have not even spoken to the neurosurgeon since we arrived here 9 weeks ago. And his helmet is too big for him to roll around on the floor with which is what I see him doing a lot at home while he plays. So in my conversation with the wonderful NP, we are going to image him for the prosthesis while he is already under for g-tube surgery which means we can start that process before we go home. They are also going to order him a new smaller helmet in a couple weeks when the swelling goes down even more.

So. All is well. And I feel soooooooo much better.

I am really grateful Parker is doing better today. Last night I was really worried about him.

I went home over the weekend and Darrell was with Parker so I didn't see him for a few days. On Saturday he mentioned he had dark circles around his eyes. The past few days and nights he had not been sleeping well. He keeps waking up at night and just laying there awake quietly so we don't always know. Then yesterday he only took two half hour naps. By last night he was lethargic and not at all his happy contented self.

The doctor planned to take him off IV fluids over the weekend to see if he would start drinking more. He didn't. At all. Earlier this week I had gotten him to drink 2 oz of water out of a cup. Yesterday he would clamp his mouth. If I did get any water in him he would hold it in his mouth and not swallow it until I poked his cheeks and it dribbled out. By last night he was really dehydrated. I am sure that was adding to his lethargy. Thank goodness for PICC lines and IV fluids.

Then he threw up. I had finally gotten him to eat 3 oz of puree. I gave him a bite of vanilla pudding. He gagged. Gagged again. He looked at me like I was trying to kill him and then threw up everything. Poor kid. He throws up multiple times until there is nothing left in his stomach. I've been there. I know how he feels. Poor kid.

On the bright side, he was very snuggly and cuddly. He was super sweet and he still enjoyed rolling around playing with toys.
And he is doing MUCH better today. I want this blog to be a record we can keep so I want to include the good and the bad so that we can appreciate the good. Because it is so good.

My kid's new favorite activity at the gas station. It makes for a great pre wash. I love that they were so excited to help clean their dad's car for him. They even helped vacuum and scour the inside for him earlier today. Sweet kiddos. Now we are off to snuggle and read Pippi Longstocking. Good night!

All is well. The Doctor had a nice chat with the insurance. It was more they just wanted to talk to the doctor and see his projected treatment goals and date. We are approved for the next 3 weeks which we were aiming for. It is still up in the air whether or he will get a g tube. They are going to taking him off iv fluids over the weekend and see if he'll drink more. He has been meeting his caloric needs which is awesome. Continue to pray that he will drink more and use his right side. He started weight bearing now on his right and he will hold toys in his right hand which is awesome. He just needs to move it more. He continues to head in the right direction.

Cyndi I absolutely and completely love it! Thank you!!!
 

 

I've learned some mad skills as of late!!! See??? I also said "more", I am getting better at rolling front to back, and I am soooooo close to getting back to front. I just have to get that silly arm out of the way. You know which one. I try so hard during my therapies. You would be proud. I am getting much stronger at tummy time and holding myself up longer. You should see my neck control. My therapists say it is impressive. They are nice. My mom is nice, too. She feeds me yu...mmy food. And she doesn't drop me when I surprise her and bite her arm. Hard. Thankfully mom warned the new therapist in time today or I would have gotten her arm pretty good. I just love to eat. Anything really. My toys, shirt, sock on my arm, spoon, food... bananas... But especially cars. I LOVE to eat matchbox cars. I will do all kinds of tricks, like roll over, if that is my prize. Mmmmmmmm. Cars...

Everyone says I am cute. They are right of course. Especially when I smile. Mom loves my mischievous grin most. She says something about it reminding her off me, whatever that means. I am so good. I rarely fuss or cry no matter how hard the therapists work me. I mainly make faces. That let's them know I've had enough. I am learning some animal noises like panting like a dog and mooing. I smiled everytime mom moo-ed at me during speech today. Then I tried to copy her. She thought that was pretty cool and got really excited. She also gets really excited when I give her kisses. Amazingly I have not bit her cheek yet. The kisses are worth the risk, though. They are that good. What do you think. Should I get her?

This was the first time he both laughed and smiled at the same time. That takes some coordination, you know.

 

So... Parker said Mama today-- a lot. I am pretty sure it is official now that his second first word is Mama!!!
When they asked "Where's mama?" He instantly looked directly at me several times. When I asked "Where's my nose?" He lunged for my nose and twisted the heck out of it and thoroughly explored the orifices. He's got that one down. As seen by my cover photo... he really likes noses. He also found his own nose today and pointed to his mouth when we asked where his mouth was. This shows so many things! He is understanding what we are saying and following directions. He is spatially aware both of his own body and his surroundings. He can physically cross midline. About a week or two before he fell, I had begun teaching him his body parts, beginning with his nose, mouth and cheeks and it shows he is relearning that. It also shows he can see!
He is still throwing up. With or without the throw up getting enough food in him is tricky and very time consuming. After I posted about the g-tube, I had two wonderful friends contact me and talk to me about their children's g-tubes and what a blessing they are. It takes so much of the stress out of feeding them, giving meds, and making sure they are getting enough calories and fluid... Right now we spend about 5 hours a day just feeding him. This morning it took 40 minutes for him to eat 4 oz... which he threw up. I immediately began feeding him again and got him to eat 3 more ounces plus 10 small bites of muffin and I was super proud of myself. It was over an hour in all. I can't do that when we come home. Thankfully I have 5 hours a day I can devote to that at the moment, but a g-tube is looking better and better all the time. Sometimes people are concerned about the scar, I figure that scar is the least of our worries. This kid has some serious war wounds to show off and be proud of. He is a fighter and has worked hard to earn them.
A big concern that popped up today is our insurance wants to potentially send us home. The Doctors are going to fight for us, but I figure some prayers in the right direction can't hurt a bit. (That's where you come in) Our insurance has been so incredibly amazing so far and I know we will go home when the time is right. As I look back at the past 10 1/2 weeks, our timeline has been in the Lord's hands all along. If possible, we would love to stay as long as possible because he is progressing so much! He gets 3 hours of directed therapy everyday, in addition to what we do with him in the room in any spare time we have. Also, the therapists in the hospital are AMAZING and I am in awe of how well they read him to know how much to push him and how far and help him discover his potential way before I would dream possible. I am not ready for that to end yet!!! Jessica was laughing tonight that we are praying for Parker to stay in the hospital. She found it ironic. Aren't we supposed to be praying for him to get better? He is getting better. Every day.

I have so much to be grateful for. Parker and I had a delightful day!!!. I am grateful we both slept well, he ate a good breakfast, he officially rolled front to back in PT today!!!, he ate a PB & J sandwich for the first time and loved it (so much he ate too much... and lost it), I had a delightful lunch during his nap with delicious food from RMH in the sunshine with a good book, he said mmmmmmamama!!!!!, he was snuggly and cuddly, I had a wonderful visitor (thank you thank... you), for dinner they had a duo playing the guitar and singing which was fun, he got a bath and smelled so good, I visited the PICU for the first time since we left and several people remembered him and visited with us including the nurse who brought him in the life flight, I had a great conversation with my sister, tonight several former nurses stopped by to see Parker and said he looks great, he likes strawberry boost, and I have amazing friends who are taking care of my kids this week while my in-laws are gone. I am truly overcome by the kindness and generosity of wonderful people. Thank you.

Jessica on the bars

Today was the girl's first gymnastics meet!!! It was a wonderful day all around. I really wanted all of us to be able to go. I mentioned it to the nurse and she said sometimes they can get a "sitter" to sit with Parker. I talked to the Dr. and at first they were not going to be able to do it, but then he remembered he has a PICC line and they were able to get him a sitter from 7 am to 7 pm. We didn't take them up on the whole time, but we did take advantage of the opportunity and went to the temple together. It was amazing. Then we went to the girl's meet. It was so fun to be home to do their hair and get them ready. They did a great job!!!

 

 

 

 

Sorry to post twice in one day. I realized with that last post that I recorded more what he needs to work on and less what he has learned recently. This first picture is significant for many reasons. He is looking at me in the picture. That is huge because we don't know how his vision was affected. He is actually looking at and focusing on me. (not the camera) He is smiling and has a twinkle in his eye. He is smiling!!! I love that he will play, focus and interact with me mor...e now!!!

Even a week ago he was always curved when sitting because the right side of his trunk was not engaged. This week his trunk and core are straight! He is equal in his tummy and core muscles!!!

Last week and before he would ONLY look to the left, and after great coercion to the right. This week he volunteers to turn to the right. Notice in the first picture he is playing with me and his head is turned to the right! According to his brain injury that right side should not exist.

Today he said "Hi." So clearly the therapist and I both looked at each other shocked. It brought tears to my eyes. Again according to his scans, speech should be impossible. The brain is truly amazing. The right side will take over those areas that the left side controls that were injured. He said Hi!!!

In this last picture, every time I kissed his cheek during speech, he would turn and kiss my cheek. It melted my heart. Granted it was the open mouth slobbery variety, but I loved and cherished every moment.

He also answered to his name today.

He really is miracle baby. One priesthood blessing he received said that we would see God's hand made manifest. It manifests everyday. And I am so grateful.

 

 

Both the therapist and doctor said Parker won most improved this week. He is doing really great. He also has a long way to go, but he is well on the right track. The biggest things that need to improve right now is he needs to engage his right arm and start drinking more. Please pray for that. His left arm is getting pretty good now, so much so that he is not even trying as much with his right. He often will snatch whatever toy we put in his right out with his left and put i...t in his mouth so we resorted to pinning his left arm down today. The therapist kept laughing because as his right arm would try so hard, his left arm was just wiggling trying to get out and help, or take over, whichever way you want to put it.

His left arm has improved so much over the past month and I really don't want his right to fall too far behind. I feel like this is a crucial time for it to engage. Please pray his right arm and leg can really engage this week.

With his tummy, he still throws up occasionally, but not nearly as often. The last time was because since he is teething molars, he keeps trying to stick his hand back as far as he can to chew on it and gags himself regularly. The nice thing is that it has only caused him to throw up once. Before even if he started coughing his cookies were coming up.

His appetite is improving, but he is still only getting about 60-80% of his caloric needs, which is fine for short term. The problem is he is not drinking hardly anything. I have bought multiple sippy cups, we have tried straws, all different kinds of drinks... Right now he gets IV fluids overnight, but if he does not start drinking he will need to get a g tube before he goes home and we would love to avoid that. Please pray he can start drinking.

We appreciate you all so much. It means so much to have so many friends rooting for him and praying for him. We really feel so loved. He is a fighter and a trooper. He works so hard and complains so little and is just a delight. Thank you.

 

I need to take a poll. It looks like since Parker is so young and his trunk control has improved so much he will likely not need a wheelchair, but I do need to find and get a really good quality stroller. What are your favorites? It needs to have good support through the trunk, have a place to support his feet, be maneuverable with one hand and have a great basket underneathe. And collapse easily and well.
And/or if you have seen any really great crocheted or knit caps or hats, I am looking for fun ideas for those, too. Thanks!

I have much to be grateful for today. Amazing therapists who care, delicious lunches at the RMH ( today was BBQ chicken pizza and salad bar with brownies), a beautiful sunny day, wonderful kind ladies who clean my room each day and ask about my baby, amazing grandparents who drop everything to take care of my kiddos, an amazing supportive husband, that Parker is beginning to eat a bit more and is now cleared for all liquids because he is protecting his airway so well, and a wonderful morning of water play in speech therapy. I am really blessed.

This was wonderful. I am so grateful for the wonderful man I married. There is no one I would rather hold hands with through this trial.

The most overlooked characteristic of who you want to marry

There is one vital characteristic you should look for in a spouse but unfortunately, it is often forgotten.

familyshare.com|By Kevin A Thompson

I see a Y in our near future...

Tablets are truly amazing inventions. After some rambunctious rounds of throwing the suction ball on the window amidst raucous laughter, we are now having a nice calm quiet Sunday morning in the hospital... We will break out some games soon, but I think we all needed a few minutes of calm. I haven't posted what to pray for recently. As we start looking towards bringing him home eventually, he is eating better, but only just over half of what he needs to be eating and drinking. Please pray he will start drinking more especially. He still throws up, but not nearly as often as last week. Also pray he can really engage his right side and begin working towards some form of mobility. Thanks! Happy Sabbath!

Getting our Halloween on! He got to trick or treat and he did a great job.

This was my view outside my window when I woke up this morning. It made me think of the talk by Elder Uchtdorf that got me through the PICU.
There may be some among you who feel darkness encroaching upon you. You may feel burdened by worry, fear, or doubt. To you and to all of us, I repeat a wonderful and certain truth: God’s light is real. It is available to all! It gives life to all things. It has the power to soften the sting of the deepest wound. It can be a healing balm ...for the loneliness and sickness of our souls. In the furrows of despair, it can plant the seeds of a brighter hope. It can enlighten the deepest valleys of sorrow. It can illuminate the path before us and lead us through the darkest night into the promise of a new dawn.

Last night was a long walk through memory lane. This morning was a blessed reminder of the distinct shafts of light during that time and now. Thank you for your prayers and support. We have really been so buoyed up.

"The darkness does not dissipate all at once, but as surely as the night always gives way to dawn, the light will come."

Happy Halloween!

 

 

 

I just found this picture tonight. It was exactly 2 months ago that Parker fell. This picture was earlier in the day after a carnival of sorts with games and facepainting.

 

 

 

Per my husband's request I have not posted many pictures from those first weeks in the PICU. I am so grateful to be done with that part.