Daily Dose: Monday, January 25

Hope: up close and personal

Sleeping Hope

Hope in the mirror

Hope hasn't had too many doctors visits so far this year, but she has a big one coming up tomorrow. Tomorrow Hope (along with Mommy & Daddy and Grandma & Grandpa Robinson) will all load into the car and, bringing along ALLLLLL of Hope's equipment, will have a day trip. They will be traveling down to Ann Arbor to meet with with Hope's doctors there regarding cochlear implants. It should be quite the elaborate procedure throughout the day with all of Hope's equipment. When Hope is at home she breathes humidified air, but when she is in the car, she doesn't get that humidified air and tends to dry out a lot, which can cause her trach to need more changing or get clogged up, and we don't want that!! Since it will be a pretty long drive, along with the appointment, AND the drive back, Hope gets to take all of her home equipment, but that also means that Hope needed a bigger vehicle to make room for all of her equipment and her "escorts". So tomorrow morning everyone will load into a large SUV that the family rented just for Hope's trip.

In other news, Hope is getting back into the swing of things. Over the holidays she had a break from her physical and occupational therapists. Therapy has started back up again, and even though Hope wasn't overly thrilled at the beginning, she is starting to get back into the swing of things. She is getting so much better at holding her head up which is great!!

Hope is asking for lots of extra prayers tomorrow while the family is on the roads.

Daily Dose, Saturday June 13

Hope has had a very good couple of days. On Friday she got up out of bed and played on the floor with her physical therapist again. She tried to tell him at first that she wasn't in the mood to play and she wanted to sleep, but everytime she would pretend to sleep, she'd open her eyes back up and find that he was still there!! Finally she figured, 'what the heck' and decided since she was up she might as well play.

As you can see from the last picture, Hope is still enjoying her mirror. She fell asleep watching herself in it.

Hope has broken another weight milestone. Her latest weight is ..... drum roll please.... 10 POUNDS 2 OUNCES!!! Hope is now over 10 pounds!!! Way to go Hope!!!!!

Daily Dose, Tuesday June 9

Hope spent the morning playing on the floor with her physical therapist. She did very well with it which everyone was very happy about.

The doctors weren't ready to try giving her a bottle just yet. They want to wait until she is not getting breaths from the ventilator as trying to swallow when the ventilator is forcing air into her lungs could cause her to choke.

Hope got to meet another special person today - Carol Zinneker came to visit Hope. She brought a cute flower for Hope to put on her crib and look at. Hope is so happy to have met a new friend and is thankful for the beautiful gift.

Daily Dose, Monday June 8

Hope shared one of daddy's favorite past times with him today - celebrating her support of her (daddy's) favorite baseball team, the Boston Red Sox. Hope was so happy when her friend Ann sent her this hat so she can now share a hobby with daddy. Hope and daddy cuddled and talked all about the Red Sox today.

Hope also spent some time playing with Jason her physical therapist and Marla, her occupational therapist. Everyone was very happy with awake and alert Hope was and how well she did with her therapies. Jason talked to mommy and daddy about bringing in some play mats so that Hope can get down on the floor and play with everyone like a regular baby. Hope, mommy and daddy all thought this was a fantastic idea and are all very excited about the idea of getting to play together like that.

Hope took another tub bath today. Although she's still getting used to the sensation of slipping into a tub of warm water she's getting more and more used to the spa treatments. After the warm soak, Hope got a manicure (her fingernails trimmed) and a facial (some aquaphor lotion rubbed on the dry spot on her forehead). Hope thinks she could get very used to this pampering kind of stuff!!

Daily Dose, Friday June 5

Hope settled into her new surroundings a little more today. She got out of bed to play with Jason her physical therapist. Overall, Jason was pleased with how Hope was doing.

On the possibility that Hope's brady and desat "events" are being caused by mild seizure activity the doctors decided to start her on a regimine of phenobarbital. The EEGs that Hope has had showed that she is at risk for seizures but no actual seizure activity, however, the EEGs were only run for 20-30 minutes at a time and it's possible that Hope just didn't have any seizure activity during that time.

Hope got goood cuddle time in with mommy and daddy. Hope is allowed to have more toys at her new hospital which makes her very happy - she spends lots of time watching her new ladybug mobile!

Daily Dose: Wednesday, March 11

Hope: day 94

Hope had a very alert day today!!! And she looks great!! Today she had a head ultrasound and echo cardiogram in order to rule out the infection might be coming from the abscesses in her heart or brain. Even though there was already an echo they did another one for some reason. Good news!! Nothing suspicious was found!!!

The physical therapist worked with Hope today and said she is doing everything she should be at this age so we are all very THANKFUL for that.

Hope is continuing in her fashion show, the Hope Collection. Today she is modeling a cute little "duckie" ensemble. Of course at this rate, what isn't cute on Hope?

Daily Dose: Monday, March 9

Hope: day 92

Hope had another good day today. She has a new attending doctor that will be taking care of her until March 27th. She had no big developments, which is a good thing, today. She is still on her vapotherm and tolerating her feeds. Hope seems to be struggling a little to digest her feeds, at least more so than the last time her feeds started back up. But the doctors are still pushing forward, so she's still getting her feeds. Hopefully she picks up on the digesting soon.

Hope had some physical therapy today. The therapist worked with Hope for a while and determined that she is actually doing really well, for right now at least. Given all the setbacks and challenges she has had thus far, along with the implications of the PVL, this is really good news. This doesn't guarantee that things will be smooth sailing forever, but for today and right now Hope is doing well and we are all very thankful for that.

Now... for the update on the Biggest Fatty.... today, Hope weighed in at 1820 grams which is..... drumroll......................

more drumroll.................

4 POUNDS!!!!! Way to go Hope!!

As you can see from the picture above, the fashion show continues. Hope is modeling a cute little outfit from Mommy's cousin Kelly and her husband Jerry. Hope said she really likes this ensemble from the Hope Collection and she sends a great big THANK YOU to cousins Kelly & Jerry.