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!