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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I am so excited! For the last several weeks, Parker would only nap if I was holding him, and the longest he would sleep was 20-30 minutes. He used to take 2 1 1/2 hour naps. Yesterday he only took 2 10 minute naps. He needs more sleep!!! I talked to the Dr about it and he recommended essentially swaddling him and putting a large heavy pillow over his midsection. I also downloaded some meditation/white noise with water and birds. He just slept for almost an hour. His eyes even fluttered open a couple of times and he went back to sleep. This is HUGE!!!

Parker's Christmas stocking so far. Thanks Tami for getting me started way back then.

This little boy is troublesome. He is in a very oral phase right now. Think 4 month old with teeth. LOTS of teeth. Sharp teeth. He got 4 new teeth in the PICU. I always say, If you are going to get 4 teeth all at the same time, you might as well be on morphine.
He is chewing on EVERYTHING, including his dad's and my shoulders, as well as therapist's fingers if they are not diligent enough. Yesterday he was completely useless in therapy because he was chewing on every toy, o...r shirt, or finger in reach. We finally had the brilliant idea to give him a piece of Graham cracker during OT which he LOVED. (My idea, actually) He could grasp it, bring it to mouth, take a bite and bring it down while he chewed. It was awesome.

This morning he bit my shoulder so hard he left teeth marks through two layers of shirts- hence being troublesome. During PT today his shirt was soaked because he kept chewing on it. He was so one-track minded chewing on a sock that protects his PICC line that I finally switched it to his right arm so he would engage his right side, which worked until he realized he could not pull it with his teeth to his favorite left side. He started chewing on his PICC line dressing instead until... He got a really sad face. Then started crying. Hard. With big crocodile tears. It was sad... but a little funny. All right a lot funny. Poor kid. But sometimes you have to laugh or cry. And sometimes it's good to get a taste of your own medicine.
And on the bright side his hand/mouth coordination is improving by leaps and bounds! And bites ...

Since I only see my kiddos a few times a week at the moment, I may or may not be a sucker for things like blanket tent sleepovers in my room on a school night...I really miss my kids. I think this is one of the first school nights I've been home to actually help them with their homework, see what they are learning in school and hear them practice the piano. We Skype sometimes for homework, or they have brought it to the hospital, but it is not the same. I want to cherish these moments and never get too busy when life gets back to normal. I really love my kids and miss them. This makes me want to go in there and snuggle with them... Think they'd mind me squashing them?

 

I am feeling much more organized and less overwhelmed. A good friend recommended getting a 3 inch binder for all of the bills and paperwork. Thanks to fancy hole puncher, shredder and a long counter at the nurse's station I am feeling a whole lot more on top of things. Now I have a specific list of people to call, questions to ask, and bills to pay instead of an overwhelming stack of papers and envelopes and legal jargon and.... I think I will go to bed now.

You can tell you've been at the hospital a while when you go to check the hours at Costco and you enter in the hospital zipcode... Parker is doing well. He is still throwing up, but he is eating better and his tummy seems to be feeling much better. He started vocalizing today, mostly really adorable sighs. Ahhhhhh. He has always been fairly quiet, but since being here he has definitely preferred the strong silent type. He is a hard sell, but I've gotten him to chuckle almost every day. He is finally starting to get ticklish! Oh, and the swelling and fluid have gone down a ton. We sure adore this little boy!

 

I am glad we never got rid this toy! It has been a favorite with all of my kids at this stage. He can kick with his legs or play with the toys... Or grab the side with his hand and manhandle it which is what he's doing as I write... He is obviously a little big, but it really is perfect at the moment anyway. The kiddos came up to visit this morning. It is cool to have a break for a few days both for the break and also to see the changes that are more obvious. Jes was playing with him and he was finding her nose and mouth when she was asking him to, which was fun. He did throw up this morning when he overate, but I noticed he is eating a whole lot better than last week. He does not seem nearly as upset and nauseated. Overall it is a great start to another week.

 

 

 

 

Sweet angelic little boy. He continues to make progress everyday which is amazing! Today in speech his therapist said "get the train" and he immediately reached over and grabbed the train. We were both so shocked. Then she said "put it on the track" and he tried but couldn't reach, so he pulled it closer to pool qhim. He didn't have quite the coordination to get it exactly on the track but he understood! When we first got the MRI data, the one thing several doctors mentioned ...was language. He lost pretty much the entire left side of his brain, including the area that controls language. They said hopefully he lost expressive instead of receptive language so he can understand what you say. He absolutely understood us today. I'm excited to see what else he can do.

He did not throw up today. Yesterday he seemed nauseated all day. He would go to eat and act hungry, but within a few bites his stomach was upset. Today they started him on Zofran. Good stuff that zofran. I have so much sympathy for him from my morning sickness days. He seemed to feel better this evening than yesterday.
And I got a date tonight! Darrell brought Thai takeout tonight. We took Parker in the stroller and ate on the patio table outside, put him to bed, went for a run and snuggled and watched a show. It's been a great day!
Have I mentioned how much I love this little boy!

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Parker got his very first bath in 8 weeks today! Several have asked if he is still throwing up. He didn't yesterday, but he did twice today. He nailed his PICC line hence the bath. His tummy really seems to be bothering him. I can only get 3 oz in him each feeding and that is even with multiple breaks to burp and let the food settle. Last week he was eating 5-6 oz each feeding. He is getting pretty high caloric food at least. Poor kid.
This weekend marks 8 weeks since the ac...cident, and he potentially has 8 weeks of rehab ahead of him if he continues to make good progress. It could be shorter, but longer means he is making good progress and can really benefit from 3 hours of therapy a day.

It has been a kind of emotional week. Both ups and downs. He has made some amazing leaps and bounds in therapy, but I also worry so much about his little tummy. They are working on solutions. His rehab doctor and team are truly amazing. It is also a bit emotional because this marks about our halfway point. Hopefully we are on the downward slope of the hospital, but his recovery will still take months and years. He is an amazing little boy. The therapists keep being amazed at how hard he tries and how far he has come. I am so curious to see what he does and who he becomes in his life. I know that blessings come from our trials and I am so curious to see how he will be blessed having to overcome so much at such a young age. We have seen miracles and I know we will see many miracles to come. I know we are and will see God's hand made manifest. We sure love this amazing little boy. So many have told me they are praying for him. Thank you.
And thank you for the sweet birthday cards from my ward friends. I was having a rough night tonight and remembered I had not actually finished reading through all of them. I am glad I saved them. They were perfect tonight. We so lucky to be surrounded by so many wonderful friends both near and far. Thank you.

 

 

 

Have I mentioned that I love my insurance? They just called me to follow up with a claim I had called about last week that they already took care of. The people at Aetna have been wonderful to work with!

Today was awesome day in therapy (spoken with an awesome English accent.) I love his PT! I love that she reads Parker so well and pushes him. She gets him to do stuff when I think he is still weeks away!!!

He laughed!!! Technically it was more of courtesy chuckle, but there was definitely laughing material in there! He has some sparkle back today.

Tonight I am grateful for a lady manning the grill in the hospital cafeteria who reminded me we always have things to be grateful for and that God will never give us more than we can handle. I needed that today. Parker threw up again. Please pray he can stop throwing up.

That's it. I totally want to learn to play the harp like that and walk around the hospital playing for little kids someday... Or maybe I will stick to the ukulele I supposedly gave to Darrell for Christmas last year but I am pretty sure I have played with it more... Oops :)
Parker is doing well. We are all so perplexed as to why he is still throwing up so much. We have tried all kinds of things. Every time we have a theory, the next time he throws that theory out the window wit...h his breakfast. Silly baby. He is making progress, though. 2 weeks ago he was still on a feeding tube and crying all the time. Now he rarely cries. He is starting to give us half smiles. They are working on rolling and he is starting to initiate the roll from side to belly, or when I play wheels on the bus he will initiate some of the actions with his left arm. They are working on neck control with tummy time and he tried to curl his knees under himself today. His right arm and hand have relaxed and are no longer tonal, which is good. They were really clenched and curled before. He can hold a toy with his right if we put it in his hand, but he cannot reach and grab yet, but he can with his left. He tries hard during therapies and makes the cutest noises when he is frustrated.

Three weeks ago he felt exactly like a newborn to me, just bigger. The next week a 1 month old, the next 2 months... The doctor said that is about right. He will gain a week every couple of days. I printed off a bunch of pictures of him eating for the first time, tummy time, crawling, some of his first steps... They are really inspiring to look at because I remember the joy with each milestone. Hopefully he will continue to progress exactly as he is doing. It is fascinating really.
For instance chewing. Don't we take that for granted? It is so amazing give Parker a little piece of Graham cracker, watch his jaws mash, lips keep it in his mouth, tongue move it around, saliva moisten it, until at last he can swallow it.
You always want your baby to stay little and not grow up so fast. This isn't exactly what I had in mind... But I appreciate the magnitude of each of these steps all the more this time around. It is fun and so encouraging to be able to celebrate each little miracle and milestone along the way.
We hope you guys are doing well!

 

Your prayers work so very well. Please pray he can stop throwing up.

Whenever I am home I hear phantom cries. It makes me miss my baby. I am sooooooo grateful we got to keep him.

Parker officially started Rehab today!!! That was the next major step along the way! I sure hope he and Darrell sleep better tonight then our night last night. I think my 6th call in 2 hours to the nurses station (3-5 am) went something along the lines of "Can we just shoot the IV machine?" I really hope they have a better night. I convinced the kids to all have a sleepover in my room tonight really just so I can fall asleep before they do. I got to come home with them today and we tackled Halloween costumes! I really love my kiddos. I miss them so much during the week. We had some hints at smiles today. Keep praying!

Swipe is really quite cool and really beats out touching each letter when you don't have access to computer, but please forgive any creative typos in my posts... :)

Tonight I am so grateful for lots of things. I am grateful for an AMAZING rehab team. I am so grateful we ended up at Radys. I did not realize until talking to the case worker today what a blessing that is. If we had ended up at CHLA instead of UCLA we would not have been able to transfer because it would have been a lateral move. Because UCLA does not have rehab, we had to move anyway so we were able to transfer down here.
I am immeasurably grateful for excellent insurance ...who have had EXCELENT customer service every time I have called. They even resubmitted a massive claim when we were being balance billed with no problems at all. I am grateful for miraculous head control. I am grateful for a high chair and unlimited burb cloths... And laundry. I am grateful for delicious meals served by kind people. I am grateful for a good book. I am grateful for amazing friends and family. I am grateful for my scriptures. I am grateful for big blue eyes and ridiculously long lashes that get the nurses every time. I am grateful for a smart phone. Seriously. What perfect timing to get one for my birthday! I am grateful for a quick run. For showers. For yoghurt. For fun show I can look forward to. For bedtime stories. For a few precious moments to do homework with my daughter. For grandparents and friends. I am grateful for prayers. Please pray that Parker will start smiling again. He smiled a ton that one morning which I now know was a special gift and answer to some special prayers. Please pray he will start smiling again.

Well the baby just feel asleep in my lap. I have learned how to hold him for naps now and keep my arms free. He is doing well. Last week he has absolutely no control over his head and this week he is lifting it, beginning to turn to his right and we even did a bit of tummy time. His favorite thing when eating is to drop his head forward over and over which makes us have to be fairly creative with how to keep his head up. Darrell called me over the weekend and played "Gotta k...eep your head up, oh..." And it now runs through my head constantly!

He is beginning to focus more and actually look at the toy he trying to grab which is huge. He has quite a bit of "neglect" on his right side which means it is harder to see, feel, and be aware of his right side. We are trying hard to play with, stimulate and use that right side to wake it up. One thing he did in therapy this week that was cool is he had a toy in his left hand so I put one in his right. He dropped the toy in his left, reached over and grabbed the one out of his right which was HUGE because he was acknowledging his right side! It was also pretty funny.

He is still occasionally throwing up, just often enough to keep me in stitches whenever I feed him. He most often throws up if I accidentallybfeed him over 7 oz, but he threw up his lunch today after only 5 oz... Who knows why. They can't take out his PICC line until he is getting enough fluids because they give him IV fluids overnight. So we spend most of the day feeding him (5 meals hopefully 6 oz each), going to therapies (3 hours total), or napping in between therapies. I am still trying to figure out how to get him to sleep longer that 30-45 minutes. He will lay for over an hour in the bed calmly without sleeping, and within a minute of me holding him he is asleep-silly baby. I have never been one to hold my babies to sleep, but I am making definite exceptions. I just need to figure out how to help him nap longer. He just such a light sleeper now. Hence the really long post today. He is still sleeping in my lap and I don't dare move...

 

I am so grateful for my sister Kelley Drury Birrell and her amazing son Josh. Many of you that know me have heard me talk about him. He is 14 years old and sweet as can be. He has had seizures since he was a baby and also has Aspergers. He and his family have been through so much, especially with the seizures. Kelley is the one I called when we were dealing with Parker's seizures in the beginning and when we got the devastating MRI results. I love her so much, admire her and ...appreciate her wisdom and faith. This weekend Josh was playing basketball and had a seizure. He fell and broke his jaw in 3 places and pushed his front teeth into his gums. He does not deal with pain well, or hospitals well, or restricted diets well, and they have experienced miracle after miracle with him. This was only 4 days ago and he is already almost off pain meds and was out playing basketball today. I love my sister, nephew and their family so much. Keep Josh in your prayers that he can continue to heal and that they can find a way to control these devastating seizures.

Look what Darrell found. Check out 1:32. The girl they interviewed was sitting right next to us. The guy in the blue shirt started to interview her and then us, but he had to stop and go down to record live at the front of the hospital. We didn't go down to pet the penguins because a certain little boy was in dire need of a nap after 2 1/2 hours of therapies and all the excitement. http://www.cbs8.com/…/penguins-parade-through-rady-children…

Penguins parade through Rady Children's Hospital

Two SeaWorld penguins visited patients at Rady Children's Hospital Tuesday.

cbs8.com|By Jeff Zevely

What a great day! Parker had all 3 therapies back to back this morning and he did awesome in all 3. He is beginning to lift his own head and we even did a little tummy time today. With how his head was lolling last week I didn't know if he would ever hold it up. He also moved his head to look directly at a toy before he reached for it and grabbed it. He is also focusing on us and toys more. I am really encouraged. Then Sea World came to the hospital today and we got to see re...al penguins waddle down the halls. We might be on channel 8 news, but we may not have stuck around long enough. I also had two wonderful friends come to visit which was delightful.

Then I have known a changing of the guard (Grandma's) was going to happen for a while, but I didn't know when or how and within less than 1 hour of texts and calls today everything is arranged perfectly. I have THE best mother, in-laws, and friends a girl could ever ask for. Then I made a dreaded call to my insurance about a bill that didn't get processed and they were AMAZING to work with and even called the provider while I was on hold. My baby feel asleep in my arms, my kids and husband are coming to visit tonight and I have wonderful book to read (Gifted Hands). I am feeling very blessed today. :)

 

That was fun. An LDS Church ward was serving dinner at the Ronald MacDonald house tonight. They were from the Penasquitos stake and I did not know anyone, but it was fun to feel a sense of familiar tonight.  :)

We needed trial run to make sure it would fit. :)

Parker is doing well. He went through an agitation phase last week where he was crying and throwing up a lot and he ended up throwing up his feeding tube, but he is eating solid baby food really well all week so they have left it out. He just gets IV fluid overnight. He is beginning to purposefully use his left hand now and both grasp and let go. His right hand he can now grasp with, but not nearly as purposefully. He is much calmer now that he is past the agitation which is ...so nice. He seems to understand simple commands like "let go" or " up" Today his new thing is if I say "come get me" and tickle his belly in different spots he will find my hand and grab it. This week they are working a lot on getting his body in "midline" which means straight. Since his left side is much stronger he curves, tilts and looks to left. This week we will be praying he can strengthen his right side and get in midline because it is hard to orient your world if you are always curving to the side and looking sideways. Two major prayers were answered this week. The fluid has gone down soooooo much. Even more than when I saw it yesterday. Also, our main set of keys went missing the weekend we were life flighted to San Diego 3 weeks ago and we finally found them today. God hears and answers prayers both big and small. Maybe not immediately like we think they should be, but he answers then better than we often hope. Thank you for your prayers.

We made it to a pumpkin patch!

 

 

The CT scan just came back and the fluid in his brain is significantly reduced!!! They have no reason to image it any more!!!! Thank you for your prayers.

Sisters are the best!

My family is dropping like flies. Please pray that Parker and I won't get sick! Or Darrell! Parker had awful night last night, but we are about to snuggle for our second nap today. I am downing Airborne and On Guard.

We are soaking up some vitamin D. Parker actually just fell asleep out in this garden after PT. And we both got a blessed nap this morning. I just LOVE his OT Missy and PT Wendy. All of them are amazing, but these two are so fun and enthusiastic and hilarious when you get them together. Wendy has this delightful English accent that is just... magical... and it make me smile.

Parker decided to take matters into his own hands last night and get rid of that obnoxious feeding tube once and for all. He threw up so hard in the middle of the night it came out. He kept down his dinner, but threw up his feeds at 9 and 2am, then kept down his breakfast until OT when they were teaching him how to use a sippy cup (!)and he decided he'd had enough. At least he is happy! I just changed the laundry (his blankets) at the Ronald McDonald House and we are going to go take a nap. We don't know if the nausea is being caused by all the fluid in his brain, but please pray it will absorb on its own.

Comment updates:
Ashley Drury Swenson And sorry that every happy post seems to be followed by a hard one. 'Tis the name of the game. Take 2 steps forward and one step back, and you've made a little progress. I love that the OT said "look back 2 weeks ago." He has made so much progress!!!

Ashley Drury Swenson They left it out today. They are doing IV fluid overnight to keep him hydrated. He is supposed to eat essentially 7-8 baby food containers a day, but they are much more concerned about hydration. As long as he keeps down his dinner, he has eaten 5 and kept down 4. My goal was 3. They just gave him a bunch of meds, though, but positive thoughts, right? :)

A dinner of champions. This was Parker's first real meal. He almost finished off both the squash and bananas, but I am a bit leery of overfeeding at the moment... You wouldn't think I'd be nervous to order food and feed my own child- I have 4 kids after all. But nervousness aside, it was wonderful!!!

 

Snuggling with my baby. I was trying to convince him snuggling on my bed was a good way to take a nap, but he had other opinions. Sweet baby. He just finished eating an entire jar of bananas with a spoon! Apparently I might start ordering him food of the puree menu. He did throw up his meds again this morning, though, but the banana has stayed down... Knock on wood. I am so grateful he has been happier this morning. He had a rough week. I was so grateful I was able to go home... this weekend and recharge. I REALLY needed it. Words cannot express how grateful I am for my kind, amazing, supportive husband who stayed with Parker all weekend and does so much for all of us during the week, this little baby, my amazing kids, my wonderful mom who has been here going on 4 weeks , the amazing support network of family, church, friends and neighbors, and the assurance from my God that everything will be fine. We can do this. We can do hard things. "I never told you it would be easy, I only told you it would be worth it." "Be still and know that I am God."

 

 

Parker keeps throwing up and he has been crying and throwing up for 3 days now. Poor baby. He has a pretty big build up of fluid in his brain right now that might be causing the nausea. We are praying it will stop growing and begin to absorb on its own and/or that the neurosurgeons will be guided to the right course of action-whether to wait, evacuate or shunt it.

I am so excited to watch General Conference with my kiddos and mom this morning and weekend. I am really REALLY looking forward to a weekend full of spiritual lifting and emotional strengthening through amazing talks by our Prophet and Apostles. https://www.lds.org/general-conference/watch?lang=eng

General Conference archives of The Church of Jesus Christ of Latter-day Saints

God speaks today through living prophets at general conference. As you study these messages, you will receive greater guidance in your daily life.

Comment Update: Darrell is giving me a much needed break and he will be watching from the hostible (as my kids call it).  I miss him, though.

The pictures don't do justice.  Silly baby. I stepped away for 8 minutes to grab breakfast and bring it back to the room. I came back and he was smiling covered in throw up. We think he does not appreciate getting all of his meds in his feeding tube at the same time. This makes throwing up 5 times in the last 24 hours, but they seem to correlate with med times. At least it doesn't seem to bother him today. He just fell asleep in my arms. Thankfully we both slept sooooooo much better last night.

First smiles today!!!

Comment Update: I got a video, but I can't figure out how to post it from my phone.

Does anyone know how I could set up a page for Parker? I have thought about a blog, or caring bridges, but I don't have time or thought power to figure out a new thing, so I thought about setting up a Facebook page.

Poor baby. Ever since 2:00 yesterday has been rough. He has either been crying or asleep in our arms or both. I sincerely hope it is just from weaning off the meds. He threw up last night I am hoping just from crying so hard. I sure love this little guy. I am really grateful he gave me two 3 hour blocks of sleep last night, plus a little more this morning. I didn't think we were going to get any sleep.

We went on a walk this morning and came across a Legoland activity at the hospital. My mom helped me build a pumpkin to decorate my room. In PT I worked on learning how to roll over again from my side to my back. I liked best to roll back and find Mommy. Sometimes I get really stiff and I have to do lots of exercises to keep from getting too stiff. I got to eat some banana baby food with my OT from a spoon today. I am slowly getting this swallowing thing down better. I like to lick my lips to get the rest of the delicious banana. I sure wish she'd let me have more. My favorite place to sleep is my Mom's arms. I am like a newborn in many ways at the moment.