Some pics

So we did have some fun times while we were in Boston! Amy, Jason, and Maddy introduced us to Edaville Railroad. I think I already blogged about it, but Katie really loved the train ride, looking and lights and Santa!

Katie, JJ, and Maddy waiting for the train

Katie and JJ waiting for the train
The train is here!
Katie and I looking at the lights

Loving the train ride

Katie and Jason

Loving Santa. How great are both faces!!

We really didn't take many pictures in the hospital. I do wish we had a picture of her walking with the IV pole, but we missed that opportunity. The first thing she did when we got there was climb under the crib. I think she thought it was a fort!!

Loved riding in the car. She did several laps!

We also took several laps in the cart.

Again, we are so thankful to be home. Katie has been recovering very well. We were finally able to wash her hair yesterday. It was still pretty knotted even after the detangler and conditioner. During the surgery she had electrodes on her head applied with very sticky "glue", so that has been challenging to get out. She had another bath tonight, and I used a lot more conditioner this time, so she's starting to look much better. Honestly, you can barely see the incisions with the way her hair just naturally falls!

We're Home!!

We're back in PA!!

We did have a nice restful weekend in MA. Katie didn't sleep that well on Friday night, woke up once saying "no, no, no" and then woke up again calling "mommy". JJ stayed in the room with her and was able to eventually get her back to sleep. I however, did not hear her and slept a solid 8 hours in the other guestroom. Kind of felt like a new woman when I got up in the morning! We really just stayed in played, watched every Christmas show on TV, and relaxed. Katie was definitely getting back to herself. She was playing with one of those music tables, and dancing on the hearth. Apparently she likes being on stage! She ate pretty well, napped, and was happy. We actually wanted to leave on Saturday, but the doctor recommended we stay at least to Sunday. JJ went to a friend's Christmas party for a bit, and brought me back a full plate of yummy food, and plenty of desserts! It was hard for me not to go, being a crazy social butterfly, but my rational side took over, and thought taking a 2 year old to a Christmas party 5 days post op wasn't the brightest idea:) Thankfully, Katie slept really well Saturday night, and we headed home around 11:30 on Sunday. I have to say it's been a crazy several weeks. It feels nice to be back and focus on the joys of the Christmas season.

Almost Home

We were discharged today at 2:30! Before we left we went down to the activity room, and made a Christmas ornament. They were also playing music, and of course Katie was dancing on the stage to Miley Cyrus! Hard to believe she just had brain surgery on Monday. All she had this morning was Tylenol, and she didn't appear to be in any pain. She's such a trooper!!

We're staying with another friend's parent's house in Assonet, MA. for the weekend. We're not exactly sure when we'll be back in PA. The doctors just said to touch base this weekend and let them know how she's drinking, eating, and feeling in general. They didn't say specifically how long we had to stay. We'll also keep an eye on the weather to make sure we don't plan to leave during a snow storm! Hope to be home Sunday or Monday.

No More Hospital!

So far as long as Katie eats and drinks ok, we're leaving the hospital this afternoon!!

We had a pretty fun afternoon and evening yesterday. Katie loved playing with her Aunt Meggie. While I as at the hotel, JJ and Megan stayed with Katie. She was supposed to be napping. The head of her crib is elevated and instead of napping she was using it as a slide saying "wee wee"! She eventually did fall asleep. Dr. Scott came by and again said how pleased he was with her progress. The swelling is sooo much better, and the incisions look good. They did have to put a bandage on her head on Weds. because she kept trying to touch the incision. Weird as it may sound she actually looked pretty cute with a big tuft of hair sticking out the top of the dressing. By Thurs. afternoon, she took it off. Her monkey even got a head wrap, Katie thought that was pretty funny. We then found this "carriage/wagon" to ride in, we did 3 laps, she loved it! In the evening we had some visitors, and she was totally showing off, and being silly. She did fall asleep by 9:30. She did pretty well overnight with the bottle. Not as great this morning with the bottle, but ate some cereal and fruit. Everything really did go very smoothly, but I am very happy to be leaving. It was so nice to see all of our Boston friends, but next time we'll do it without a hospital stay! I really can't express how lucky we feel to have so many wonderful people in our lives. I know Katie may have some hardships in life, but having so many people who love her and care for her will get us through! xoxo

Better

I didn't get a chance to write yesterday, but here I go...

Wednesday was a little rough. She was very sleepy, and whenever she woke up she would say "ouchy" So they advised to keep giving her the morphine. I was having a tough time seeing her like that....my sis in law, Megan, came in from Minneapolis around 2pm, and we hung out for a bit and then I went back to the hotel to rest and shower. When I got back Katie was MUCH better! Awake and eating a chip:) Made me feel much better too....

The IV did come out in the evening, but the doctors said we didn't have to put another one in. Just encourage fluids. We were feeding her every 2 hours, she wasn't taking in that much. During the night I only fed her every 3 hours.

This morning we got up around 6ish, but then slept in the pull out couch for a couple hours! She is close to being back to herself! We went to the playroom, Physical Therapy came to see her. KT did great basically running around the hallway. Even jumping! Needless to say, she didn't need any further evaluation:) A music therapist came to our room, and we sung some Christmas songs, and she loved that! She's still being a little fussy about drinking and eating so still working on that one. We will most likely be discharged tomorrow, and will stay in Boston for a couple days, to make sure she is still doing well. Hope to be home by Monday.

Out of ICU

We are now in a regular room on the neuro floor 9N. The ride over in the crib was rough. She did not want to be in the crib, and was almost trying to jump out! Her arms and legs were hanging out through the crib rails. We did make it safely, we only had to go up 2 floors. She eventually calmed down with some cuddling and Morphine and napped for a bit. During her nap we lost the IV, it infiltrated, so now her hand and arm are swollen. Thankfully, the same nurse who got the IV in on Sunday was here today, and got another one in. They did give her some calming medicine before sticking her, which helped. She is still fussy, but her personality is still peeking through. We were watching Rudolph, and she was laughing at his red nose:) The swelling in her face is getting worse and her eyes are definitely more swollen, and slightly purple. That is expected so, no worries:) Hoping she can get some rest tonight. xoxo

We made it!

I'll start off by saying, Katie is doing very well. I just left her sitting up in her crib watching Diego!

So here we go...we checked in on Sunday around 3pm and went up to her floor, 9Northwest. Her nurse, Michelle, was very nice and checked us in. The IV nurse came and put in an IV. Katie is not a big fan of that a lot of tears, but thankfully she got it on the first try! The reason Katie was admitted the night before was for IV hydration, so they started that right away. We were even able to walk the halls. I have to say, Katie was pretty cute pushing an IV pole:) We did some coloring and watched Mickey Mouse, Dora, Frosty, and Santa Claus is Coming to Town. It was hard to get her to sleep. I stayed over with her, and she finally went to sleep at 11:30. Unfortunately, she woke up and hour later, and I eventually had to sleep in the crib with her! Quite an adventure, lucky that I'm only 4'11":) We both did get some sleep. The night nurses, Colleen and Shannon, brought us down to pre-op holding at 6:30. Katie would not get in the crib so I just carried her. We watched some cartoons in the holding area and they took her back around 7:30. Only one parent was allowed back to the OR, so I went with her, kissed her bye, and she was off to sleep. Tears, but we were ok. Then JJ and I headed to the waiting room. JJ found a great spot with a couch, so I actually crashed for a bit. The liason nurses were wonderful and updated us every 1 1/2 hours. Incision was made at 9am. Dr. Scott and Dr. Smith (his partner) operate together. Dr. Scott started on the left side, and Dr. Smith did the right side. Dr. Scott came out around 12:30 to update us, saying everything was going well. Then Dr. Smith came out around 2:15, and they were done! Very little blood loss, she got the breathing tube out and was on her way up to the ICU. We waited a bit so the nurses could get her settled, and we were in the ICU by 3pm. She looked better than I thought she would. The docs did warn us that her head and face would be pretty swollen, so we expected the worst, it wasn't too bad. They did say it will get pretty bad in the next few days, but start to go down by Thurs. They did a nice job shaving her hair. It's not that bad, she still has all the curly locks in the back, just the sides of her head are shaved, and the incisions are behind the hairline. They're a decent size, but her crazy hair will definitely hide them! She was pretty irritable yesterday, and throughout the night, and was up every 2 hours. She did need Morphine for the pain, but is doing much better this morning. She's only had a little water, but hopefully we'll start the Pediasure later this afternoon. The doctors were very happy with the surgery, and feel she will have a great outcome. We will most likely be leaving the ICU in the next few hours and going back to the neuro floor on 9N. Yesterday was a long day, but went as well as it could. We're very thankful to have her back in our arms! She even is getting back a little sense of humor. She tells everyone bye bye when they leave and blows a kiss!! Not sure on an exact discharge date, but should know more tomorrow. Thanks again for all the well wishes, messages, txts...we appreciate it more than we can say! xoxo

Weekend

So we had a nice couple of days. Trying to have fun before the hospital. On Friday we went to see Maddy at gymnastics, of course Katie wanted to go out on the floor with all the kids. Maybe next year! Then we played with the fun toys at Amy's parent's house, and made a trip to the Wrentham outlets!! Shopping is always a good distraction:) In the evening I visited with Kristin and family, and then we headed for take out in N. Attleboro called Soup Works. Very yummy!! Had a nice relaxing evening watching Aladdin.


We were especially excited for Saturday night. We went to Edaville to ride the train and see Santa. Katie loved the train, and xmas lights. She was even super excited to see Santa. She did great, we captured a great smile. I'll post it another time:)


We said goodbye to Foxboro this morning, and now are in Charlestown with friends. Teddy and Katie are having fun playing.


The plan is to check in today at 3pm. Surgery should be first thing tomorrow, and last about 6-8 hours.


Thanks for all the love and prayers. I know some aren't able to post a comment, but we are getting the emails and texts. xoxo

Angiogram

Everything went well yesterday. We got up early to be at the hospital at 7:30. Again, I forgot how crazy 95 is in the morning, and in Mass you can drive in the breakdown lane during certain hours. A bit scary, so I stayed away from that:) We made it there no problems. They took us back around 8am, and she was in the procedure room by 9:15. They let one parent go back with her, so I went in with her. They use banana smelling gas to put her to sleep. Some tears for both of us, but she was asleep within seconds. By 11am they were calling us back to recovery. She looked so cute, she was in a regular size hospital bed, so I was able to lie with her. She had to be flat for 4 hours. Amazingly, she was good! Now they did give her some Morphine, and we were watching cartoons, so that helped. Her voice was a bit scratchy from the anesthesia, but she was ok. For my medical friends, they did intubate her and used a size 2.5 ETT. She does have a tiny airway, but again no complications! The neuro radiologist was super nice. He basically just confirmed what the MRI showed. We also talked with the neurosurgeon, Dr. Scott, and the plan remains the same. We're being admitted on Sunday for surgery on Monday. He said that the surgery would be 6-8 hours. The plan is to operate on both sides of the brain to revascularize. She will have incisions on both sides of her head, but he said they will be behind the hair line, and they try to shave as little hair as possible. Thank God Katie has a TON of hair! We ended up not having to stay over, so we were heading back to Foxboro around 3:30pm. She was alittle cranky last night and this morning, but is now playing great with her friend, Maddy.


We made it through the first part, hopefully the surgery will be just as smooth. For the next few days we will be hanging out with the Boston crew. We may even go see Santa!

Safely in Boston

We had a little change of plans and came up tp Boston yesterday. The docs decided they wanted to see Katie today for some preop testing. So we arrived in Attleboro around 6pm, and had a great dinner and visit with friends. Today we headed to Children's driving on Rt. 9 down memory lane. I forgot how Mass people drive for one!! On our way to the hospital we passed my favorite mall, the Atrium, then a bagel place I forgot about finagle a bagel, Star Market, and then Cleveland Circle, where a number of the BC bars are located. What great times!! Seeing these places did calm my nerves a little. The preop testing went well, no blood draws, so that was a relief! Her angiogram is scheduled for tomorrow at 9am. We have to arrive at 7:30. The nurse practioner said it could take anywhere from 2-4 hrs. She will stay overnight until Thursday, and then we will head back to our friends. She will then be readmitted on Sunday for the surgery on Monday.

First Timer

Our Wonderful Family

Katherine Renee

Mommy and Katie at her 2nd Birthday

Daddy and Katie at Thanksgiving

So I'm starting this blog with a preface

1. I'm not very computer savy

2. English was my worst subject, so I'm not sure how creative this will be

3. I can't type

We'll see what happens!

Anyway, here's my Katie's story.

She was born on November 4, 2008. She was very small, 3 lbs. 4 ozs., 14.75 inches. Thankfully, she was healthy. No breathing tubes or oxygen, but she wasn't the greatest eater. She ended up coming home to us 19 days later with a feeding tube. She had it for 9 months, but is now doing great. Many doctor appointments later, she was diagnosed with primordial dwarfism. We found a wonderful doctor at DuPont in Delaware, and he and his team have been taking great care of her. Well, these children are prone to vascular problems in the brain so they have annual MRI's just to be on the safe side. Katie's most recent scan did show some problems. It's official term is moyamoya (means puff of smoke in Japanese). Basically means the arteries in the brain are narrowing and she needs surgery. With some assistance we decided on Boston Children's to have her surgery. She will have a cerebral angiogram(closer look at the arteries) on Dec. 8th and the surgery will be on the 13th. We will be staying with friends in between the test and surgery. I went to school up there, and JJ was stationed in Cape Cod while in the Air Force. We actually met in Boston, thanks to Megan and Cara...thanks for that:) Boston is a safe, happy place for us...

Here's the link to the Children's Website if you're interested.

http://www.childrenshospital.org/clinicalservices/Site2156/mainpageS2156P9.html

We also sold our townhouse. Who knew that in this market it would sell so fast. We put it on the market in the middle of October thinking it would take at least 6 months to sell. We were wrong. It sold in 3 weeks. So in the meantime, we are living back with my mom...she's amazing, and totally comforting...Once Katie is recovered, and my mom is sick of us:0 we will start to look at homes again. Probably early spring.

I will be using this blog to communicate and fill people in on KT's progress. According to the docs the typical recovery time is 5-7 days, so we should be home by Christmas. Thanks to all for your support and prayers. Couldn't do this without you....