Introducing......the new thumb.

Before drugs

After drugs!

Julianne is asleep so I slipped to the next hospital room to use the internet since our room's service wasn't working. So if I leave off mid-sentence it is because I hear crying.

Julianne did great once again with her surgery and I must say her hand looks great! Dr. Cornwall gets two thumbs up from Julianne! I can't wait to actually see her cute little hand and play Itsy Bitsy Spider with that new thumb. The best news of the day is that she WILL actually have a pincher grip - wow - isn't modern technology awesome.

Now to the more serious side of the day: The anesthesiologist did not like the fact that her heart rate was high again. He called in the head cardiologist who did hear a murmur and feels as though he is feeling her heart through her chest a bit too much. So tomorrow she will undergo an echocardiogram to look for any issues with her heart. He stated that since she has to be sedated for the procedure, she cannot have any food/drink after midnight AND he was not sure what time her procedure would be done tomorrow. I am taking bets it will be done later in the day rather than early. Ok, let's think about this.....she had barely any food today and the food and drink she did have is soaked into my clothes since she threw up twice. We'll see how the day goes.

The funny part of the day....for this surgery, I brought three pairs of shorts with me just in case I am showered in vomit/pee like the last time. Well, let's just say that all three pairs have been officially used. I am now wearing scrubs brought to me by the nurse.

Thanks for all the prayers!

Surgery Tomorrow

Please say a prayer tomorrow betwee 7:30 and 12:30 since that is when Julianne is having her surgery done tomorrow. Her cute little thumb will be removed and made way for her pointer to take its place.
I dislike the thought of her being put in a cast again since she is once again discovering and using her short hand. Her favorite use of it right now is to perform "Itsy Bitsy Spider"; as soon as she hears it, she'll whip off her brace and begin to make the signs for the song. I will miss that for the five weeks she has the cast on.

Lazy Days!

*Julianne went on her first vacation to the Great Smoky Mountains this past week. She traveled like a pro with very little tears or fussing. Her favorite part of the trip, we believe, was swimming and playing in the dirt.

Cades Cove in Smoky Mountains Park

Now that school has officially ended for Jon, summer can finally begin. He was taking some classes through Miami to renew his license for teaching and they are over at least until September. We are trying to savor each and every moment now.

Some of our summer happenings thus far:

*Jon and I both had birthdays last weekend. I reached a milestone of 40 and I don't feel a bit different. Imagine that.

*Julianne got her cast off, wearing a brace and her little arm is looking good. Unfortunately it will go right back into her cast this Tuesday since she is having surgery #2. This is a five hour surgery that gives her a new thumb. She'll have to wear this new cast for five weeks.

*Julianne has been walking for a month now and getting better and better. She has graduated from physical therapy since she is doing so well. She is starting to climb steps which is quite good since she hasn't mastered crawling.

*Julianne is now about 23 lbs and has grown at least an inch to two since we met her three months ago.

*She is saying "hi, hello, dog, dad, bird"and a few other possible words. She loves to sign - please, milk, more, poopy (sorry), up, eat, etc.

We look forward to a fun and relaxing summer.

Swallowed Tooth

As much as I try to pretend that my oldest, Leah, is not growing up, reality just keeps slapping me in the face. Yesterday, as we were eating tuna for lunch, Leah asked me to look at her wiggly tooth...what tooth? It was gone. At that second, Leah realized that she had swallowed it and was quite devastated that she never got to see it. We decided that she should write the Tooth Fairy a letter explaining the situation and so we did. As she woke, she found a crisp one dollar bill under her pillow and already had plans how to spend it. For awhile, though, she contemplated giving it to charity but then the image of a toy popped in her head.

As much as it is bittersweet to see her grow up, she still is very much a little girl.....we woke up at 4 am to a little one crawling in bed with us since she was scared of the thunderstorm that was making its way through our town.

And four casts later......

When we were waiting for Julianne to join our family, the wait was extremely difficult for so many reasons, but Jon and I kept reminding ourselves that the timing was in God's hands and we had to trust His plan. As time goes on, we are starting to understand why we had to tap our fingers until March. Ironically, there was exactly twelve weeks from the day we left to the last day of school and that is the amount of time that my work is allowing me to stay home with Julianne. And let me tell you, there is NO way that I could have worked and taken little Miss Julianne to all of her appointments which have turned into a daily event. She is healthy but many of the doctor visits are precautionary due to her "radial longitudinal deficiency". We feel so blessed that this is the case and we need to keep this in perspective to the big picture. So keeping this in mind, I will tell you about our stressful week. Julianne woke Friday with a fever and it progressively got worse on Saturday with a temp. of almost 104. Since she just had her surgery, I called the orthopedic office to see if it could be related....and they said bring her into the ER. Ugh. Six and a half hours later, it was determined that she just had a virus. They did check her stitches and pin which all looked great (at least they said it did). A new white cast decorated her arm so all was good or so we thought. Not so. On Monday morning, when I reached for Julianne in her crib, I noticed her new cast was halfway off (or halfway on to be more positve). Again I called, and yes, we had to bring her in again. On the way there, I looked into the rearview mirror and to my horror, saw that the cast had completely fallen off. The pin and stitches proved to be fun entertainment for Julianne on the way since she was picking and tugging on them. Deep breaths got me to the hospital especially since stitches are my biggest phobia and usually make me quite light-headed. So now Julianne became pretty in pink with a new pink cast. Never did I think this one would fall off too. But yes, it did (today). To Cincy Childrens we went and left with a new pink cast. Let's just hope this one stays on.
Other than our medical drama, Julianne is awesome and we are amazed at how much she is learning.

Surgery....again

A trooper is probably the best way to describe Julianne these days since she has been through more medical procedures in the past two months than most people in a lifetime. At least we can say that we have really only received good news from the barrage of tests that she has undergone. Yesterday she had a test to rule out bladder reflux and thank goodness, it is just fine. Quite a stressful test for her since she was placed under a machine where she could not see me. It was fairly quick though. On Tuesday, we had an orthopedic appt. to be sure that her pin had not shifted and it thankfully is still in place. Also her cast is coming off on June 22, so we'll take all this good news anyday. However, just as soon as one cast comes off, another one is on the way since surgery is right around the corner again. On July 7 (yes, that soon), she is having a 4.5 hour surgery on her fingers. Her thumb will be replaced by her pointer finger. The younger she is then the easier it will be for her to learn how to use it.

Firsts...

Her first attempt at cruising in the kitchen. We better start babyproofing! Her first tea party.

Her first dance recital.

Her first cake....can you tell she liked it??

Citizenship and the Zoo

Seeing the fish and manatee

Waving "hello" to the elephant

"Aren't those from China, Mom?"

Julianne became a U.S. citizen as soon as we touched ground in Chicago back on the first of April, but we now have the document to prove it. She can now apply for a social security number, birth certificate and also a passport for that return trip to China (someday). Unfortunately, she will never be able to be president - not that we would really want to subject her to that anyway.

Julianne is recovering very well from her surgery and is truly back to herself. Before we left the hospital, I pushed for an EKG since her heart rate was so high. For those of you that do not know, heart and kidney conditions usually accompany "radial longitudinal deficiency" but thank goodness, everything panned out ok. As of now, her hand/arm/shoulder are the only affected areas from her condition.

I took Julianne to the Cincinnati Zoo last Friday with my sister and nephews - Heinrich and Peter. I wasn't sure if Julianne would really pay attention to the animals. The facial expressions that she made after spying each animal proved to me that she knew that they were more than just funny looking "dogs".

Post-Surgery

She has no idea what is about to happen. OK...now she does.

Safe in daddy's arms (and Monkey's).
Go Muskies! (Xavier U.)
Feeling better.

Now that all the tears and pain have subsided for the most part, I can now say that Julianne made it through surgery like a champ. Her wrist is now almost perfectly straight due to a pin that is placed in the wrist. She will need to wear her cast for about six weeks and unfortunately about three months later, we will have to endure another surgery to move her pointer finger to her thumb position. Her current thumb is called a "floating thumb" due to no metacarpal so it will need to be removed.

Prior to surgery, Dr. Cornwall had asked what color we wanted Julianne's cast. I wanted a color that would not show dirt due to the fact that she is still using her arms to help her become mobile. So I said, "Let's have the Xavier (my Alma mater) blue color." Dr. Cornwall added his touch by putting a big "X" on the cast with glow-in-the-dark white. Go Muskies! Too bad we're not in the March Madness season.

After surgery, we were called back to her recovery room where we were informed that her heart rate was sky high - hitting over 200 beats per minute. We are still not sure if it was due to pain/stress or if this is an indicator of a heart issue. Currently, as Julianne is babbling, 152 is the current number which is still high. She is now in her crib without me holding her - just amusing herself with her lovies - monkey and blanket. Leah and Natalie had saved up money and bought Julianne a monkey back in November and now she cannot go to sleep without 'the monkey'.
As I sit here with pee and puke on both my shirt and jeans, I am feeling so blessed - three awesome daughters, a loving husband, Children's Hospital, health care, supportive family, and the list goes on.....

Surgery Tomorrow

We leave before the rooster crows tomorrow (5:00am) to get to Children's Hospital for Julianne's centralization surgery. She will be in surgery for 2.5 hours and she will be staying the night so they can watch for any hand swelling under her cast. I believe she will wear her hard cast for six weeks and then eventually transition to a brace that she may have to wear 24/7 for quite some time. So prayers would be appreciated as you wake tomorrow morning. We'll keep you all posted.