Nightmare

In the midst of my hectic day, I decided to take a break and tell you all a nice little story.

One of my worst nightmares came true this month... yes. It was shocking.

Jason and I were going to the Resolved conference. I, being the queen at packing, packed both of our bags (and darbs'). I'm usually very meticulous about them and only leave out a couple items at the end to ask Jason about before we leave. Jason came home, bags were packed, but he did a sweep of the house to make sure there wasn't anything else he wanted to take. I walked into the bathroom and saw him brushing his teeth... "oh I'm sorry! I totally forgot to pack your toothbrush! Make sure you grab it and put it in the bag, I already packed mine," I hollered as I went back to collecting our items. Trips are the best time to change toothbrushes, so I left my old toothbrush in the holder and had packed a new clean one.

I started taking the bags to the car. On my second trip, Jason caught me and handed me a toothbrush for that bag I was holding. The toothbrush was wrapped all perfectly like I like it... in a clean paper towel, thick enough that dirt or germs can't get to it, and it can't touch the other things in the bag and be contaminated. I was so impressed that he took the extra strides to wrap my toothbrush. Isn't he sweet? The handle was also blue...

"Honey, I already told you, I don't need my toothbrush, I packed a new one for myself," I stated nicely.
"This isn't your toothbrush, its mine." said jason with an odd look on his face.
"No. Thats MY toothbrush."
"no... blue, thats MY toothbrush."
"Yeah, blue, thats My toothbrush."

We both run to the bathroom.

A red toothbrush sits alone in the holder.

"See, red, thats YOUR toothbrush." says Jason...logically, since I do love red.
"NO, YOU USE THAT RED ONE!" now i'm panicking.

Jason starts laughing, I just keep looking at him in horror. Apparently we've been using the same toothbrush. I start racking my brain trying to figure out when this mistake happened... but it could have been weeks!

Jason just keeps laughing, I keep looking on in horror and denial, and he goes to get a new toothbrush out of our Costco pack of toothbrushes.

This is also when my throat starts to hurt as I think about the germs.

For the rest of the weekend we kept reciting to each other our new toothbrush colors. He was green, I was yellow.

The End.

Interview

Q: How is the Hendrickson family doing?

A: Good! We're staying busy and being crazy... which is probably an understatement. Jason is working and I am keeping up with our home and our almost 8 month old baby! Not to mention our tons of doctors appointments and therapies that I have to keep in order :0)

Q: How is Darby doing after the surgery?

A: He is recovering well. It was rocky at first, but he's feeling a whole lot better and getting back to being himself. His stitches have been removed, but he's got a nice goose-egg bump at the incision site. It should go down soon, but it looks kind of nasty and really stands out with his new shorter hair cut. When people see his head, their eyes get kind of big :0) and they assume he bonked his head.

Q: What has Darby been up to recently?

A: Darby and I stayed the night at UCLA last Monday. He had an overnight EEG. The wonderful news is that the results show Darby is no longer having seizures during the night! This is really fantastic news. There are still no signs of his Infantile Spasms either. The neurology team is thrilled at all of this! So they sent us home encouraged, and are looking forward to his therapies and assured us that his eye should begin to heal soon as well.

Darby has also started his physical therapy! Yay! We finally got pushed through the system and have started with his physical therapy once a week. He is funded to get it twice a week, but the vendor is super busy and his therapist doesn't have the time in her schedule yet. Soon we should be able to get two days a week. His Occupation therapy will be starting very soon as well. His child development services will be starting soon, but they are waiting for the right therapist to have some more open hours. All of the therapists are very qualified, but some are definitely better with infants (especially the ones that have been moms :0) ), so they are waiting for that. Darby pretty much hates his PT. He cries the entire time, but its good for him. They are working his muscles and showing me ways to work with him at home. His scores for his motor skills are so low because of his army strength and his torso strength being so low. But we're working on that! Tummy time 3x a day, arm stretches at each diaper change, and torso strengthening anytime we hold him in our lap.

We will be starting with infant massage and vision therapies soon too!

Q: How are you and Jason?

A: We're good :o) Jason is going to his family reunion in South Dakota next week. Darby and I won't be traveling with him, due to our doctor's concerns of us traveling that far. We will miss him dearly! But we know he's doing to love visiting his family and being in the Black Hills.

We're enjoying being parents. We love Darby more and more every day. We love each other more and more every day too. We'll be married for 3 years next month! Yay! We're hoping to celebrate by going to Disneyland and California Adventure for the weekend, sometime this summer.

Having a child with special needs is definitely challenging, but God has been really gracious to us and to our marriage. Jason is a fantastic husband and father! He helps me with dishes and cleaning and Darby and pretty much anything that I ask! He makes sure I get 'me' time and that we get our own time together to laugh and relax. He knows how busy I stay and is so incredibly supportive. My family at home in SD is also just amazing. They are there for me at the drop of a hat and give me much needed moments of respite :o)

Q: Any new pictures of that cute baby?

A: YES!
Prunes!

Darby's new way of sleeping... yeah, it gives me ulcers. However, I let him sleep with his blankets around his face because I have the infant motion monitor. But what you can't see is that his face is out of the blanket. He just likes it around the sides of his face. I usually wait for him to be asleep and pull the blanket back down to his chest.

Playtime and chatting with Daddy :o)

Smitten

I have been sorting through some pictures today and came across some really awesome old ones... I just love walking down memory lane! I wanted to highlight these that pictures that show Jason and I right before we started dating... 2004ish?



Yep, that's the guy I fell in love with :o) With his Star Wars sweatshirt and his Java programming book. I still love him, although we retired the sweatshirt and probably burned the textbook... I was smitten since the first time he made me laugh, and we've laughed with each other every day since!

Friday Morning Update

Here is an update that I sent to our facebook group... weird, we have a facebook group. Anywho, its slightly repetitive, but has some more info towards the bottom. :0) enjoy!

"You are the light of the world. A city set on a hill cannot be hidden. Nor do people light a lamp and put it under a basket, but on a stand, and it gives light to all in the house. In the same way, let your light shine before others, so that they may see your good works and give glory to your Father who is in heaven."
Matthew 5:14-16

When Jason and I decided to start a family, we never had this great mission in mind. We were honestly thinking more selfishly... we wanted to be young parents, I wanted to be a mother, and we just had a strong desire to have a baby. We wanted to raise him to love God and honor Him... to seek Him in all he does and to try to impact the world... but that was going to be later, when he was older... or so we thought. We never dreamed of Darby being able to impact the world as such a tiny infant.

God gave us such a wonderful child. He is beyond sweet and charming, beyond cute and cuddly. He has also been used by God in all the trials he has already gone through. Jason and I, for some reason beyond our knowledge, were counted worthy to face these trials with our son. We were given an opportunity to be a light for others to see, and we are so very thankful for it. We wouldn't change one thing about our lives. Everyday we get to spend with our amazing son, is one more day to praise God for the gift that he is. To also trust and have to rely on God for Darby's health and well-being is a daily struggle... one that brings us to our knees and closer to the God that loves us. Its amazing to think that He loves Darby more that we do, and absolutely comforting.

With that being said, we want you to all know that God has been so amazing and all the glory and thanks are due to Him for being the ultimate healer.

Darby had a fantastic night last night. I'll start from the beginning, just in case we all need to catch up on this hospital stay.

Darby was able to avoid shunt placement... narrowly. Dr. Danielpour (DP from now on) was almost certain he was going to need to place one, but gave it one last shot and was finally able to clear out scar tissue to allow his CSF to flow freely. DP was shocked at the amount of scarring in his ventricle and absolutely surprised that anything was flowing through! After he freed this area, he proceeded to the back of the fluid pockets, and decided the membrane area was stable enough to be opened. This connects the left and right fluid areas and allows the left to help drain the right. This should really help.

The only side effect is Darby's left eye. It is dilated larger than the right eye, the eyelid is a little droopier, and the left eye is not completely able to look to the right side. This is abnormal, but DP believes he knows what happened. The 3rd optic nerve that runs from the eye to the back of the brain is SUPER sensitive. After Darby's initial stroke, the very scarred brain settled in its position of having fluids on it... when DP released the fluids, the brain also adjusted itself to where it should be, also jostling the 3rd Nerve. This is most likely what is causing the problems in the left eye. This wasn't a side effect that we were anticipating, but its pretty hard to anticipate side effects when dealing with the brain.

Darby had been in some discomfort since the surgery. He was getting morphine as needed, but we realized that we hadn't been on top of controlling the pain, so he was given 3 doses in consecutive order yesterday, and it was able to control the pain. Darb hasn't had morphine since yesterday, and has been just fine on tylenol. We came out of the PICU yesterday and are now on the Peds floor. Darby slept amazingly well last night. He woke up this morning as his cheery self, which, I can't tell you how happy we are to see that! He was full of smiles and babbling... and just happy. He doesn't have as much energy, and gets pretty exhausted after just a couple minutes of activity, but we can already just see him getting better.

He has had another CT to check for any other bleeds, but things look just fine. DP came by this morning because he received a phone call from the doctors, concerned about his eyes maybe looking worse. But DP came in and assured us they look good and actually look a tad bit better. His healing might take months, and he might not even get even pupils back, but its all just up in the air. Time is all we are waiting on.

But if he does well today, we can go home in the morning :o)

I'm most definitely mourning the loss of half of darby's hair. I loved his fuzzy little head... now its a funny short buzz with long locks on the other side. I'll make sure to take pictures today! He also has the funniest little tuft of hair still on his right, above his ear. Everything else around it is shaved... too funny. It reminds me of sumo wrestlers or monks who shave everything but one spot.

My most wonderful and gracious husband is going to be staying with Darby tonight. I'm really looking forward to being able to go home tomorrow!

We'll keep you updated... and if you read this today, please think to pray for our friends as well, The Sandersons. They are neighbors of ours, and their little Suzie is having her shunt revised/replaced this morning as well. She's a sweet little 10 month old and we are hoping that she can just get by with a revision!
Thank you all for your kindness and prayers :o)

dana hendrickson

Darby Medical Update

I thought it might be time to post an update and how Mr. Darbs is doing :o) We have been busy and have left you all with very scant details. Forgive us! But here is the skinny...

Darby went in for surgery yesterday morning. It took them a long while to do all the prep work (iv's, and head shaves...) They finally called to let us know they had started and from then it took about an hour. We saw Dr. Danielpour... his first words to us... "Nothing with darby is ever easy..." Ha... the verdict was that when DP (Dr. Danielpour) got the scope in there, he saw tremendous amounts of scarring. He said that he was actually pretty surprised that any CSF was getting through at all! He tried numerous times to get the scar tissue out... he was almost determined on placing a shunt, when he decided to try one last time. That last attempt was successful! He then proceeded to check on his fluid pockets toward the back of the brain. He decided that he would open the membrane between the left and right pockets, allowing the left to help drain the right. The membrane is open and fluid is moving better than ever!

Darby is doing well. We have been trying to manage his pain for the last 36 hours. He was getting morphine as needed, and as that was giving us trouble, we went ahead and gave him 3 doses this afternoon, in their allotted times, so his pain could get under control. It seems to be, and he's on Tylenol as well. So now we are back to giving it as needed. In the morning he will change to a Tylenol with codeine, or some other drug that we can actually administer at home if need be. That is our qualification for discharge. Besides that, Darby is doing well. Eating some and being awake some... he loves being held and is currently not hooked up to anything but a residual IV port.

The poor kid loves to rub his face, but the arm with his IV port is a huge splint and he hurts himself by knocking his head and kind of scratching his face each time he tried to rub with that arm... you'd think he'd learn, but he hasn't.

He does have some after effects... darby's left eye is very dilated and the eyelid is very swollen/saggy. His right eye is quite opposite in its dilation. DP is kind of surprised by this (something that no one ever really wants to hear) and the only thing that he can figure is that his 3rd Nerve was moved slightly. Its a nerve that is connected from the eye to the very back of the skull, and is extremely sensitive... even exposure to air bothers it. What DP figures is that with all the fluid back up, things got comfy where they were in his brain... but once the fluid was released, the brain was able to settle a little better where it should be. This would include that nerve. Its possible that darby has double vision, its possible that its just in one eye and just when he looks past midline to the right... lots of things are possible. What we do know, is that his brain looks good, the CT scan showed no bleeds and things starting to resolve. We do know that we just need to wait for his sight problems to just resolve. We could go see an ophthalmologist, but they'd just tell us the same thing... give it some time, and then come back. And its really true... looking back at pictures of darby after his stroke, were kind of surprising... his eyes were quite disjointed as they moved. Sometimes they were in sync, and sometimes they weren't, but in the end they resolved themselves just fine. We'll just wait and see... darby is already lined up to see some therapists for tracking issues and we'll just add this. Maybe we'll follow up with an eye doctor in a couple months.

As it goes, Darby will do another CT next week, visit DP, and see if the stitches are ready for removal. If not, we'll come back in another week to get them removed.

Its been a good stay :0) Darby is finally getting some great rest, and hopefully I will too! My mom has been here and been a huge help. I haven't been getting much sleep at nights, so she sleeps at night, and then relieves me in the late morning, and I go home and sleep and come back in the late afternoon to stay the night again.

Our friends have also been so great to us :o) thank you, all of you! We greatly appreciate your prayers and your practical helps... especially those delicious cupcakes (amber!).

God has been really good to all of us. We are having to lean on him, for all our worries and all our fears. He has given darby such great health and got him through all this... stuff! We are thankful and humbled, and continue to seek him. I don't think I can accurately describe all that we are learning and have learned... maybe on another day I'll try.

I'm off to bed, to sleep when darby sleeps... hoping thats a good amount of time :0)