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.