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: 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.

Daily Dose: Tuesday, September 22

Hope has been doing well!! She had a very busy day today with lots of appointments but everyone survived the busy day.

Hope saw her ear nose and throat doctor, he was happy with how everything was going and said she doesn't need to come back for 4 months!

Hope also saw her nephrologist (kidney doctor). Last time Hope's bloodwork wasn't quite what they wanted to see. It turns out that her baseline indicates some sort of chronic kidney disease. She is going to have more blood drawn in a week or two to see if things have improved now that Hope has made it through her antibiotic course for the last UTI she had.

And the big news for the day..... Hope got her hearing aids today. They will be started out on the lowest setting, then depending on how she responds they will be "cranked up" every 2-3 weeks. Hopefully in the next few days we can get a pic of Hope with those hearing aids.

Until next time....

Daily Dose: Tuesday, September 15

Hope sucking on her knuckle

Hope looking mighty cute in her "London" onesie

Hope & her mommy

Hope & Aunt Em

Hope laying low

The good news: no news is good news. Which is why we haven't updated lately. But we thought we'd give you a little update on what Hope's been doing lately.

Last week Hope had a busy week after she came home from the hospital. She had many adventures. She went to her first appointment with her pulmonologist. They were a little concerned because she appears to be very "healthy" in her weight. Her diet was adjusted so hopefully her increase in protein will help her grow longer and leaner.

Hope also had an appointment with her hearing doctor. Hope was a very good girl and sat very still in Daddy's arms while doctors took impressions of her ears to make the molds that her hearing aids will be built out of. Her hearing aids should be coming in the next few weeks and we'll be very excited to see what kind of an effect they have on Hope's ability to hear.

Hope also took her first walk around the orchard. Daddy put Hope in her baby bjorn on his chest, Mommy pushed Hope's kid-kart, and Grandpa R hauled all the bags full of "very important" things while Hope walked the long way, around the orchards, to Great-grandma's house for lunch. Hope loved doing all these things and is glad the weather has stayed nice and warm for her.

Daily Dose: Monday, September 7

Hope is back at home. She is happy to be feeling much better and even happier to be back in her very own bed. Yesterday she took a nice soak in the tub to get rid of that weird hospital smell. She got dressed and took a nap so she was prepared for a big adventure.

After the nap, Hope finally ventured out onto the screen porch. Hope wasn't quite sure at first but then she settled right in. The day was beautiful and relaxing so she decided that another nap was in order.

Hope isn't quite used to her home routine again. Last night she spent some time being restless and trying to get comfortable. Hopefully tonight is a better night. Tomorrow will start Hope's regular visits to her specialists, starting with her first follow up appointment with the pulmonologist.

In other news.......

HAPPY 9 MONTH BIRTHDAY HOPE!!!!

Daily Dose: Friday, September 4

Hope is still on track to go home on Saturday, YAAAYY!!! Hope is getting one more dose of IV antibiotics at midnight and then she will switch to the home version. Hope felt much better today so she got out of bed and spent part of the day in her kid-kart looking out the window. She noticed that she has a MUCH better view from this new room then she did from her old room.

Daily Dose: Wednesday, September 2

Hope had a better day today. She has broken her fever!! This is great news. Also, the infectious disease decided that there was no reason for Hope to be in contact isolation (interesting that we have thought this all along) so the gowns and the gloves have gone away... FOREVER!!! Since Hope's fever broke and it appears her infection has been sensitive to most antibiotics, she will need to be on IV meds for 48 hours, but then she can come back HOME!!!!

Hope did have some bad news today though: Hope had a urine dye study. It showed that her urine refluxes into her kidneys, and that isn't supposed to happen. This is mild to moderate on one side and moderate to severe on the other. Hope will be on a low dose of antibiotics at all times as a preemptive measure against recurrent UTIs. If Hope has too many UTIs it could begin to seriously affect her kidney function, which we don't want. If Hope has a few more UTIs she will likely need to have some surgery to correct the problem.

We are soooo thankful that Hope is feeling better, and Hope is very thankful that everyone has temporarily stopped poking and prodding her. We keep praying that Hope continues to get stronger and healthier so she can go home by the end of the week. Yes, you heard correctly, end of the week, THIS week!!!!

Daily Dose: Tuesday, September 1

Hope is at the hospital for a little while.

Hope's urine cultures came back positive for some infection, so Hope has an UTI. The doctors are waiting on her blood cultures to see if they come back positive as that would indicate sepsis. Hope will be at the hospital for the duration of her antibiotic regimen, which is at least 7 days after a clear culture but could be as many as 21 days after AND THEN a few more days until she gets a clear culture.

They have also discovered that Hope has an elevated creatnin level, which will be followed up on in case there is any scarring or kidney problems, but this isn't of big concern today.

Tomorrow Hope has a very full day with lots of tests and lots of therapy. Hopefully everything turns out alright, but in the mean time, Hope and her Mommy & Daddy are back at the hospital. Now we really are wishing Hope was at home because things were soooo nice when she was. But she'll get there again eventually.

Daily Dose: Monday, August 31

Hope had a very interesting day today. She was running a pretty high grade fever so her doctors thought it would be best if she took a car ride to the emergency room. At the hospital they decided that Hope most likely has an infection of some sort. They ran a bunch of cultures which they are waiting on to come back with growth tomorrow. They are keeping Hope overnight to night to monitor her and make sure she is ok. We'll update when we know more.

Please say an extra prayer for Hope, and her Mommy & Daddy since they are spending the night at the hospital tonight.

Daily Dose: Friday, August 28

Not a whole lot of new things for Hope today. She had a good day. She took a nap in her bouncy chair by the window, sat in her kid kart, played on the floor and spent lots of time snuggling with mommy & daddy.

Hope wants the rainy cold weather to get better so she can venture outside again!!

Daily Dose: Thursday, August 27

Hope and Great-Grandma

Hope, Mommy & Daddy

Hope looking great outside!!

Hope & Aunt Em

Hope blowing bubbles

Today was a great day!!!!! Hope's whole Robinson family was together. It was Aunt Em's birthday so she drove up from Chicago to spend the day with Hope (and everyone else, but mainly Hope). Hope started her day by getting her bath and getting dressed up in a pretty little outfit. Then Hope got to go for ANOTHER car ride!!! Mommy & Daddy packed Hope, and her entourage of stuff, up and took a ride up the street to Great-Grandma's house. The whole Robinson family met there for some family pictures. It was a nice, but little chilly, day out. That didn't phase Hope, she loved all of it!!!

After the family pictures, Hope, and her entourage of stuff, went home. After some good snuggling time with Aunt Em on the couch, everyone sat around the dinner table for a family dinner. In fact this was Hope's FIRST family dinner with the whole Robinson family. Hope sat next to the table in her kid kart and took it all in. At some point she eventually got so bored that she started blowing bubbles, which we found very humorous.

Hope had a great day, and the entire family had a great day as well. It was so nice to have the family together, and for Hope to be at home. Things have been going so well for Hope. She seems to be relaxed a lot more during the day, but also more alert. We look forward to many more great days ahead!!!

Daily Dose: Tuesday, August 25

Hope on the way out of the hospital!

Hope on her first outdoor ride!!

Hope is all buckled in and ready to go home!!!!

HOPE IS HOME!!!! Finally!!!

Hope was so excited to see the sunlight today and feel the breeze on her face for the first time. She is loving her new surroundings. She has settled into her new crib and was sleeping peacefully this evening, glad to finally be at home.

Hope, Mommy & Daddy are still working on getting into a routine and schedule, but hopefully over the next few days everything will work out. Tomorrow Hope has big plans to venture to the screened in porch for a little while!!!