February 21, 2010

Hope Admiring Herself in the Mirror

Hope has had a very good couple of weeks. She went to the nephrologist (kidney doctor) and many of the concerns that they had previously, we are no longer too worried about. Her blood pressure had been a little high but the doctor thinks it might just have been the inaccuracy of the blood pressure cuffs, so we aren't going to take her blood pressures regularly any more. Also, her latest blood work came back normal which is fantastic. When Hope was hospitalized back in September she had a lot of blood work done then and in the weeks following. Based on that blood work the doctors assumed Hope's kidneys were only working about about 50%. With this latest batch of blood work coming back normal they think that the spike we saw last fall was mostly if not all tied to the infection that hospitalized her and that her kidney function is far closer to normal than we thought.

Hope will be venturing back to Ann Arbor this week to begin her weekly pre-op visits for cochlear implant evaluations. She has to go 3 or 4 times in the next few weeks for evaluations and then once in March to meet the surgeon who will do the implants. Hope is not officially a candidate for the implant yet - she will have to have hearing tests done by the audiologist, with and without her hearing aids. If there is some evidence that she can hear but not well (even with the hearing aids) then she should be a candidate for the implants without further testing. If we don't see evidence of hearing then an MRI might be needed to confirm that her auditory nerve is present and at least some what developed. Hopefully these visits all go well; they make for long hard days for Hope.

Other great progress that Hope is making is that she seems to be reaching for some of her toys. She has grabbed on to a toy and picked it up once and she grabs for the toys in her crib. The is wonderful progress as one of her physical therapy goals is to develop an "active grasp", or taking the initiative to grasp an object instead of just holding on to it because it was placed in her hand.

Daily Dose: Wednesday, February 3, 2010

Hope's beautiful smile

Hope laughing it up

If she isn't the most beautiful girl in the world, I don't know who is!!! Seeing these pictures of Hope smiling and laughing has given me a little more motivation in my life and reminded me to pick my chin up and keep pushing through.

Now, back to Hope....

Hope is doing well. Things went quite well last Tuesday the long drive to Ann Arbor and the appointment. The appointment itself was rather uneventful as Hope's mommy & daddy really did not leave with any more information than they went with. It seemed to be the necessary introductory meeting for everyone: they had planned to tell us Hope would need a CT scan, hearing aids, etc. Hope has had these for months now, so there was really no new news. We have been told that we will need at least 4 more pre-op appointments with the cochlear implant team before surgery.

Other appointments last week have had more of an impact. Hope's appointment with the pulmonologist on Wednesday went extremely well. The pulmonologist was so impressed with Hope's status that they have begun weaning Hope of most of her respiratory medications, and if things continue to go well they will try to wean Hope's vent settings at our next appointment.

The somewhat less positive appointment was with the developmental pediatrics clinic. Hope was officially diagnosed with cerebral palsy (CP). Although we knew CP would be a likely outcome of Hope's brain injury, we were under the impression that it is rarely diagnosed before 2 years of age and no one was completely prepared for the news yesterday. Evidently, CP is a rather obvious diagnosis for Hope and the doctor felt no need to wait. While no one knows the form or severity of the disease yet, the news did hit everyone pretty hard.

Hope got her RSV vaccination Monday and had to be weighed beforehand. She weighed in at 24 pounds 5 ounces.... just slightly bigger than she was one year ago - 2 pounds 8 ounces!!!! Who would have thought she'd have come so far!!

As you can see from the picture, Hope has been smiling more and more and has even started laughing! It's a silent laugh because of the trach but it is still the most beautiful thing in the world right now :)

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: Merry Christmas 2009

Hope on Christmas Eve

Hope wondering how many more presents she has to open

Hope and all of Daddy's family on Christmas Eve

Hope's Christmas Ladybug outfit

Hope with Mommy & Daddy on Christmas Day

Hope and her stocking

All of the excitement wore Hope out

After the presents, Hope hanging out with Grandma & Great-Grandma

As you can see from the pictures. Hope had a great Christmas. She was very glad to be home for Christmas this year instead of in the NICU like last year. Hope got to spend lots of time with family which she always loves to do.

We'll put more of a substantive post up soon, but couldn't wait to show you all of Hope's Christmas fun!!

Daily Dose: Tuesday, December 22

Hope & Great-Grandma

Hope looking cute in her cute slippers

Hope hanging out in the living room

As you can see from the adorable pictures, Hope is doing pretty well. In the first picture, Great-Grandma was worried that Hope's hands were getting cold so she decided to share her gloves, always thinking. Hope also has some great little bunny slippers.

Hope has been doing good. Her weight has been pretty consistent, she is weighing in at 23 pounds!!!

The only big change for Hope is that she has currently been relocated from her bedroom to the living while her bedroom is being remodeled. Hope definitely misses her bedroom, but she has enjoyed looking at the Christmas Tree nonstop and has been pining over all the boxes under the tree, imaging all of the things that are inside of them. Hope definitely likes Christmas but DOES NOT enjoy the snow and the cold. She has been wondering why the family farm isn't in Florida and why Great-Grandma was a farmer not an alligator rancher in the warmth.

Daily Dose: Happy Birthday Hope!!!

The Birthday Girl in her Birthday Dress!!

Hope was laughing and having a good time

Hope in her "little room"

First and foremost we are wishing Hope a very very VERY Happy 1st Birthday today!!! It is hard to believe that it has already been a year since Hope was born. Quite the year!!

As you can see, Hope had a lot of fun today. She had a special birthday dress with a pink tutu. She liked it well enough to pose for the obligatory pictures but then it was off with the dress. Hope had such a great day today. She was laughing and smiling most of the day.

You can see Hope in her "little room". Hope loves to play in her little room. It has lots of items that are hanging from the top so she can reach up and grab them, or hit them, or kick them. She spends lots of time in her little room playing with all of the things.

While today was Hope's actual birthday, Hope got a mini-party on Saturday when Aunt Em drove up to spend some time with her and the family. Here are some pictures from Saturday's hoo-rah.

Hope was wearing another adorable ladybug outfit!!

Hope with Mommy & Daddy, getting ready to open her presents

Hope decided against the cake but she wanted cupcakes so here she is with Aunt Em and cupcakes.
After the presents were all opened Hope got to chill on the couch

Hope and Daddy playing on the floor

Daily Dose: Happy Thanksgiving!!!

After all the food was eaten, Hope & Aunt Em had some playtime

Hope wasn't as interested in the delicious food as the rest of us

Hope looking cute in ANOTHER ladybug outfit

Hope's first artwork: a hand turkey

This Thanksgiving we all were especially thankful. This was Hope's first Thanksgiving and she loved it. As you can see from the pictures, she had a cute little ladybug outfit on, making her officially cute as a bug! Hope slept through most of dinner but she had done the hard work ahead of time. During one of her therapy sessions, she finger painted and made a hand turkey. It is proudly displayed on Mommy & Daddy's refrigerator for all to see!!

Hope is doing well and looking forward to her birthday which is coming up very quickly. She also is looking forward to Christmas because she loves looking at the Christmas decorations, especially lights and tinsel.

As we mentioned before, we are all extremely thankful this year. While we have all had a setback or two in our own lives, Hope has been there to remind us what is important: family. No matter what goes wrong, we always know that we have Hope, and for that, we are forever thankful.

Daily Dose: Wednesday, November 25

Hope relaxing in her bouncy seat!

Bathtime!!

Hope is smiling!!

Hope has had a busy few weeks doing lots of things. As you can see, Hope is growing!! She is now over 21 pounds!!

Last week, Hope went to get her hearing aids adjusted. She was put in the sound booth and responded to bass tones. This is a big step because in order to have cochlear implants her auditory nerve must be developed. We are very happy that her auditory nerve seems to be developed, paving the way for her surgery.

This week, Hope went to the eye doctor and got great news!! The eye doctor said that Hope can see!! And it will only improve from here. She is far sighted and may need glasses if that doesn't improve but quite often kids like Hope will grow out of the impairment. Hope did very well tracking and locating so the eye doctor was very happy with the progress she has made.

Daily Dose: Wedesday, November 11

Ever since Saturday when Hope officially became an 11 month old she has been BUSY!!!

On Sunday the weather was so nice that Mommy & Daddy decided to take Hope for a walk. They walked up to Grandma & Grandpa R's house and saw them for a little while.

They then left Grandma & Grandpa R's house and went to visit with Great-Grandma Vivian & Aunt Dawn. As you can see, Great-Grandma Vivian and Hope Vivian had a lot to talk about. Both of them really enjoyed their little visit.

Hope is becoming such a big girl. Today she did some finger painting. She thought it was fun at the beginning and played along. But....

As you can see, at the end of her paint session she wasn't feeling so artistic. At least she was able to make a finger paint turkey before her inspiration ran out.


In other news... Mommy & Daddy are still in contact with a surgeon to do Hope's cochlear implants and are hoping that next spring they can have them done.

Happy Halloween!

Just because it's cold and flu season and Hope couldn't go out trick or treating, that wasn't going to stop her from having fun on her first halloween!

To no one's surprise, I'm sure, Hope dressed up as a cute lady bug for Halloween. She had fun getting all dressed up and posing for the pictures. She decided the costume was so comfy that she fell asleep in the middle of all the fun!

After the mini photo shoot Hope changed into her second Halloween outfit - a cute outfit from her Aunt Em.