Ku's Korner

Seattle Children's 5/15/12

Tue, 15 May 2012 23:15:00 -0700

After a long day at Children’s Hospital, we got some good news….Sarah Jo’s blood clot in her arm is gone (really a miracle since the clot was almost blocking the entire vein just 6 weeks ago)!!! BUT, according to the hematologist, the standard protocol is to treat a clot with thinners for 12 weeks. We are currently waiting on one more lab result which we should receive on Friday and IF this result is within normal range, the hematologist made a deal with Sarah Jo (since she has been such a good patient). She said that she would split the difference with Sarah Jo and allow her to only be on thinners for a total of 9 weeks instead of 12 weeks. Everything rides on the lab result that we get on Friday. So if the lab result is good her last shot will be on June 5^th, otherwise it will be around June 26th….both in time for the majority of summer break, although Sarah Jo is losing patience of having to keep her feet planted firmly on the ground with this beautiful weather.

Since the Protein S deficiency is one of the more rare clotting disorders, moving forward if either one of the girls break anything or have major surgery they will just be started on thinners right away to avoid a clot from forming. A little overwhelming to think about, but after spending the day at Children’s I do realize just how lucky we really are to have our healthy little girls. This is just a tiny little bump in the road!

In addition, the hematologist did not like the look of the swelling and bruising on Sarah Jo’s elbow, so she recommended that we get back in to see the orthopedic doc. I take Sarah Jo in to physical therapy tomorrow so I will get her opinion on Sarah Jo’s elbow and then set up a follow up appointment to see the orthopedic doc as soon as we can.

Beautiful Mother's Day...and Papa's Birthday!!!

Sun, 13 May 2012 16:33:05 -0700

Breakfast and coffee in bed. Homemade calendar from Sarah Jo, handmade pot from Sam Sam, trip to park, ice cream, a little nap while the girls played in the water with daddy (it is 80 degrees in Redmond today…seriously amazing!) and now a steak dinner to celebrate Papa’s 67th! We are all hoping for great news from the hematologist on Tuesday when we spend the day at Seattle Children’s Hospital to check on Sarah Jo’s blood clot. We are all very hopeful that there is a quick trip to Great Wolf Lodge in our near future before school is out if the hematologist gives the OK….we were supposed to be there this week, but postponed….FINGERS CROSSED and prayers sent up that blood clot is completely gone!!

Happy Mother’s Day 2012!!

Physical Therapy...

Tue, 08 May 2012 14:41:05 -0700

Sarah Jo started physical therapy for her elbow last Wednesday afternoon. She has been doing her exercises faithfully for a week, so we are both excited to see how far her range of motion has improved in one week. We go in tomorrow afternoon for her next appointment. Of course her elbows naturally extend beyond zero which the physical therapist told me might have contributed to the dislocation in the first place (or she was just trying to make me feel better). Since none of us have elbows like that, we have been “checking” the family and it appears that NanaK has the exact same elbows…heeheee. Sarah Jo’s dislocated elbow will most likely not go back to extending beyond zero, at least that is not the end goal…zero equals success in this situation so no extra credit for Sarah Jo. Next Tuesday is the full day of appointments to check the blood clot. We will be heading to Children’s Hospital downtown for blood work, an ultrasound, and a meeting with the hematologist. We are praying hard that it will be completely dissolved because with the nicer weather it is proving difficult to keep Sarah Jo’s feet on the ground.

Samantha’s class had a field trip to the Woodinville Library today. They all had a great time and were so good! It was impressive! They all came away with their own library cards…of course we would need to activiate it, not sure I’m quite ready to do that yet…we’ll see. At least she just “thinks” it works at this point because I let her check out books using my card while we were there.

Of course the girls have another cold…Sam Sam had it first and Sarah Jo woke up with it this morning. Hopefully it will pass soon. The weather has been AMAZING here, so we are hoping that all of the germs are getting burned out.

Off to walk Solo and Samantha around the block before sissy gets home, I will update with range of motion results after tomorrow’s physical therapy appointment.

Update on Thursday, April 26th....

Fri, 27 Apr 2012 19:40:00 -0700

After a long night at Children’s Hospital last night, Sarah Jo was able to get her cast off! We have a very HAPPY girl!! I am trying to set up an appointment with physical therapy to get her in next week, and the orthopedic doc said that some kids get their full range of motion back within two months, while other tough ones (referring to Sarah Jo) can regain full range of motion within two weeks. I asked if since she dislocated her elbow there is a greater possibility that it will dislocate again. He said yes, dislocation is just like blood clots, once you get one, you can develop another more easily, BUT he is not worried about another dislocation because she is only 7 years old.

He did remind us that all activity restrictions for the elbow are trumped by blood thinner restrictions, so that means walking feet need to remain on the ground until we head back to Children’s Hospital in Seattle for a full day of testing on the blood clot. That full day of testing happens on May 15^th and includes more blood work, an ultrasound, and a meeting with the head hematologist. We appreciate your continued prayers that May 15^th shows a fully dissipated blood clot which would allow her to get off the thinners, just in time for all of our fun summer plans.

We are SO proud of our girl, she has traveled this journey with such a positive attitude and few tears. She is a tough one, this one!

When we asked Sarah Jo what she learned from the journey thus far, she said, “NO MORE JUMPING ON THE BED!!” Agreed!!

Update on Thursday, April 12th....

Thu, 12 Apr 2012 20:10:00 -0700

Thank you for the continued prayers and thoughts for our Sarah Jo! This week has definitely been better than last week!!

Yesterday we got great news regarding the blood work that was taken when Sarah Jo was in the hospital. They were worried about other genetic blood clotting markers in addition to the Protein S deficiency that we already knew about which might require her to be on lifelong blood thinners. They do not believe this is the case, so this round of blood thinners should be anywhere from 6 weeks to 3 months hopefully. The possibility of lifelong blood thinners weighed heavy on us, so getting that news yesterday felt as if a weight had been lifted off. Definitely an answer to many prayers being sent up on her behalf!! On May 15^th, we have an ultrasound of her blood clot and a meeting with the head hematologist at Children’s in Seattle. The ultrasound will determine how quickly the clot is breaking up, which in turn will determine the length of time on the thinners.

Sarah Jo was a brave girl this morning and got another blood draw and we found out that her blood thinner levels are within therapeutic range which is great news as well. Hopefully the next blood draw will not be for a couple of weeks. Mommy and Daddy are rocking out the twice a day injections for her and there have been no tears for a number of days! Little Samantha likes to be with Sarah Jo while she is getting her shots, very sweet sisterly love!!!

Now for the elbow…the girl really did a number on it!! The orthopedic doc took X-Rays and removed the ace bandage today. The picture attached is of what her poor elbow looks like. Sarah Jo did find it very funny that she has almost every color of the rainbow covering her arm. The orthopedic doc thinks there is a 90% chance that it is fractured. He said that Sarah Jo’s “case” was a first for him since he often does not see blood clots with injuries like these and her blood clot is quite impressive…meaning REALLY BIG! Also, Protein S deficiency is apparently a rare clotting disorder and one that he knew nothing about until she met Miss Sarah Jo. He did give her a high five though, cause he said her elbow looked crazy…that made her laugh!! He’s awesome, as are all of Children’s docs and staff so we feel very lucky that we have Sarah Jo in the best hands possible! The plan for the elbow is to leave her in the same partial cast (hard cast below arm with ace bandage on top for access) for the next two weeks and then retake X-Rays again on April 26^th. This was the hardest part for Sarah Jo as she told us today while driving to Children’s that she really believed her arm would be fine and the doc would let her take the cast off. Good news is though that they caught the blood clot in time and we are getting great care, otherwise the outcome could have been very, very different!

Thanks for all of your continued love and support for our Sarah Jo. It means so much to us and to her!! We keep promising her this is a little bump in the road and she will back to her normal bouncy self soon!

Monday Update....

Mon, 09 Apr 2012 23:38:59 -0700

We have been able to move Sarah Jo’s daily injection times to 7AM and 7PM, which will work much better for school next week. She is being such a brave girl, but honestly she looks like a pin cushion. The girl has no fat on her tummy or upper left arm, so mommy has been doing her best attempting to find a place for the twice a day shots.

Poor little Samantha woke up with a horrible cough this morning. Since her cough really never went away from when we had the flu, I’ve decided to take her in to see the doc tomorrow, just to make sure it is a different virus and not something left over from the flu bug. I will do that tomorrow afternoon. I think she picked something up when my parents brought her to the hospital to visit Sarah Jo, but they were both crying for each other, so we needed to let them see each other while we were in the hospital.

LeLe left today…it was a good but crazy visit! So nice to have the helping hands!! We are trying to get back into a some sort of routine now….I woke up this morning and had no idea what day it even was. Hopefully I can get some sleep over the next few days!

I will post an update as to what we find out with Samantha tomorrow. Sarah Jo has doctor appointments coming up on Wednesday/Thursday of this week as well….

Sarah Jo's fall after playing chop the tree.....

Sat, 07 Apr 2012 01:18:00 -0700

On April 1st, Sarah Jo and Samantha were playing around on my bed while I was attempting to finish up a little painting in our bedroom before my sister came to visit from Las Vegas for Easter. Sarah Jo accidentally fell from the bedframe and landed wrong on her arm, dislocating and possibly fracturing her elbow. Her arm was actually facing the other way before I was able to pop it back into place. She was in sooo much pain that my dad and I rushed her to the ER in Redmond. I called Jeff and he broke a few traffic laws to come from Mill Creek to the Redmond ER that night. Since it was April Fool’s Day, there was a fleeting moment when he thought I was pulling his leg that he needed to come home from his work event, but that was only a fleeting moment after he heard the fear in my voice. The ER doc did not see a fracture, put her in a sling, got her pain under control and told us that we needed to follow up with an orthopedic doc at Children’s Hospital within 3 days.

On Tuesday, April 3rd, Sarah Jo begged us to go to school before her noon appointment with the orthopedic doc. Although she looked very pale and her elbow was the size of a baseball, I agreed to send her so that all of her classmates could sign her sling. The next 12 hours were a whirlwind….

The orthopedic doc looked at her elbow and really had no idea whether or not it was fractured, but could not believe how swollen it still was. I mentioned to him that both of our girls have a protein S deficiency which makes their blood clot more easily. The reason we had them tested was because I had a blood clot in my leg after my second radioactive iodine treatment for my thyroid cancer. The hematologist that we met with confirmed that I had a protein S deficiency and highly recommended that both of our girls be tested for it. They are both carriers of the gene. The orthopedic doc felt it best to cast her entire arm whether or not it was fractured, just to protect it and get the swelling down before we got another set of x-rays in a week. Sarah Jo was a trooper getting the cast and even thought the saw was pretty cool (they cut the cast open on both sides to allow for swelling). We had finished up our appointment with the orthopedic doc and headed back to Redmond. Within 5 minutes of getting in the car, we got a call from the orthopedic doc that we needed to return to Children’s Hospital for a ultrasound just to rule out any blood clots due to the underlying blood clotting disorder and the amount of swelling still in the arm.

When we arrived at the ultrasound appointment, they took off Sarah Jo’s cast…one of the best smelling, cleanest casts I have ever seen. After about 1 hour in the ultrasound room and a huge focus on the area right above the elbow, the ultrasound tech came back and told us that the orthopedic doc was on the phone. The orthopedic doc told us that they did in fact find a blood clot, but he was going to call the hematology doctor at Children’s to see when they wanted us to come in the next day to discuss. We left the bottom half of her cast on with an ace bandage wrapped around it and headed home.

Within 5 minutes of being in the car, we got a call from the hematologist doctor at Children’s who told us that we needed to pack a bag for a two night stay at the hospital and that we needed to arrive in the ER within two hours. Sarah Jo had a large DVT in her brachial vein. That is when the craziness began….

Here are the emails that I send out to family and friends the next few days….

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Sorry for the mass email, but I just wanted to let you know that after a LONG day at Children’s Hospital, the hematologist just called and Sarah Jo is being admitted to Children’s Hospital tonight to treat a blood clot in her elbow that occurred when she fell on Sunday. There is a possibility that her elbow is also broken, but the orthopedic doc said the most important thing is to treat the blood clot now and then we will worry about the possibility of a break later.

——————————————————————————————————————-

Sorry again for the mass email, but I wanted to let you all know that we were moved to a regular floor this morning , in a regular room, that is HUGE comparatively. I was able to find a shower this morning and a Starbucks, so things are looking up. JJ

Regarding our baby girl Sarah Jo, Jeff and I were able to do the blood thinner injection last night for her around 10:30pm. Rachel, our awesome nurse, gave us a new trick, ice the area before the shot to numb it up…there were no tears last night luckily!! Her elbow is feeling good she said, and her fingers are much less swollen. I believe that the ortho docs here want to leave it in the half cast with ace bandage around it. I think the plan is to get Xrays again on it in a week or two to see if it is actually broken. We will be following up with hematology this coming week who will help us monitor her blood thinners and give us information as to why she clotted that severely in the first place after her fall on Sunday. Please pray that there are no other genetic markers other than the protein S deficiency that we already know about. If there were, this might require lifelong blood thinners, but Jeff and I both feel confident if there were more genetic things going on, we would have already knew them by now since she is such an active girl.

Her blood thinning levels are in the normal range, so I believe we have a meeting with the pharmacy today, need to give her another blood thinner shot, have the doctors meet with us, and then they have promised we are being released. She will need to be on the daily blood thinner shots twice a day anywhere from 3-6 months depending on how long the clot takes to dissipate. We are praying very hard that will be closer to the 3 month timeframe, so as soon as her elbow is healed she is back to her usual happy bouncy flippy self.

My sister is on a flight now from Las Vegas….a huge relief for us….Samantha has been such a good girl with Nana and Papa, but it will be nice to have some extra hands.

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Sarah Jo was released from Children’s Hospital on Thursday afternoon. We
have been busy with discharge appointments, so I finally got a chance to sit
down and send a quick update. We got another blood draw on Thursday
afternoon after our release and received those results back Friday morning.
Her levels are still a bit high, but within therapeutic range. We are going
to keep her on the dose of blood thinners she is currently on now and do
another blood draw this coming week to reevaluate. Next week also brings
another appointment with the orthopedic doc to take new X-rays of her elbow
to see if he can determine whether or not it is actually fractured. Her
fingers and upper arm are much less swollen and she has not complained of
any elbow pain in the past few days, luckily.

Friday also brought a doctor appointment with our regular pediatrician which
was SO incredibly helpful. There is just something about someone who has
always cared for your kiddos stepping in and being the voice of reason to
calm your fears.

Sarah Jo is being such a brave girl with the daily shots in her belly.
There are still a few tears, but she’s a tough one. We are very proud of
her!! Jeff and I are getting a routine down and we hope to perfect it over
the next week during her Spring Break.

Flu....you kicked our behinds!!

Fri, 30 Mar 2012 13:55:07 -0700

Wow, March is a blur…literally!!! Sarah Jo and I went to a school event at Skate King, and 3 days afterwards, the dreaded flu bug invaded our house. Not too surprising since I do not believe they have cleaned Skate King since 1972. First it knocked out Sarah Jo, then Jeff, then it came after me and Samantha. We were both able to ward it off a bit, then it came back with a vengeance and knocked me on my butt. One evening, I had a 104 temperature and after my mother insisted that I go to the ER, they confirmed that yes it was the flu, but really didn’t do much else for me, go figure. Sarah Jo missed 9 days of school, Samantha missed 6 days, Jeff missed 4 days of work and I ended up going back to the urgent care for a raging sinus infection after Jeff had to fly out of town to Sacramento for work. The z-pack cured most of the sinus infection, but I’m still stuffy. WHATEVER that bug was….it was NASTY!!! By the way, Jeff did get the flu shot and the ER doc had no idea why he still got the flu….NOT a great way to convince me that flu shots actually work!!

Daddy is still cool enough!

Thu, 09 Feb 2012 10:00:00 -0800

Judging from the picture that was in the St. Louise Family Bulletin this morning, it appears that Daddy is still cool enough to dance with! The photo was taken at the Father/Daughter Dance last Friday night. So cute! Let’s hope Daddy stays cool enough for a LONG time!

Still snowing!!

Wed, 18 Jan 2012 08:28:10 -0800

Love It!!

SNOW 2012!!

Sun, 15 Jan 2012 13:34:41 -0800

Love it and just getting heavier and heavier! We already made some “snowkids” in the front yard and plan to head back out soon….then will defrost our toes by the fire this afternoon.

Also love the fact that dining room and living room are PAINTED! Thanks mommy and daddy for the help! Now the final room…the kitchen…I’m thinking yellow…got to convince Jefferson!!

Happy Dance!!!

Wed, 11 Jan 2012 12:43:14 -0800

That is what I was doing on my way out the doorway from the endocronolgist’s office. All of my thyroid levels are stable and the same as last year, so the doc gave me another year off. So very, very grateful!!!! Might do a few more happy dances today to celebrate this wonderful news!!!!

Perfect Birthday....

Tue, 03 Jan 2012 23:30:45 -0800

Even though our big girl Sarah Jo came home sick from school today….my birthday was perfect. Tons of emails and phone calls from friends far and near…THANK YOU…flowers from NanaK…special dinner at Nana and Papa’s with nothing else but Cherry Chip cake for dessert….and a charm bracelet on order from Jeff and the girls with two little baby shoes one with a June birthstone, the other with a July birthstone, so that I can always have my baby girls with me no matter where they are.

Looking forward to a wonderful year….always thankful and grateful that I am here to spend it with Jeff and our girls…not a day goes by that I do not thank the guy above for that opportunity!! Here’s to an amazing 39th year!!

Break over too fast....

Mon, 02 Jan 2012 10:51:36 -0800

I cannot believe that our girlies are back to school today…..the two weeks went way too fast! Great Wolf Lodge was a blast, as was all of the Christmas activities. Just missing my girlies today and a bit teary eyed…I like it most when all my little cub bears are home with me. It will be better by the end of the week. Hopefully we can get pictures from our Christmas adventures posted soon. Happy New Year!!

Our Sarah Jo doin’ her thing…four backhandsprings at...

Mon, 28 Nov 2011 22:28:38 -0800

[Flash 10 is required to watch video.]

Our Sarah Jo doin’ her thing…four backhandsprings at the Seattle Westin Gymnastics Show this afternoon.

Santa 2011!!

Sun, 27 Nov 2011 19:39:52 -0800

Santa 2011!!

Title of my new book....

Sat, 19 Nov 2011 10:30:14 -0800

Sam Sam’s preschool adventures!!

On Monday, I, Sammy Jane, got my 3rd virtue slip for helping the maintanience man rake leaves during my first recess a few weeks ago. Last night I raided the Target dollar bin and got lots of fun new plastic animals that I am enjoying playing make believe with.

On Tuesday, I got into a little bit of trouble during circle time because ” I just could not help myself!!!” with playing with the items hanging on the wall. When Mrs. O’Connell asked me to move to a different spot on the carpet I burst into tears…but tomorrow, I’m going to sit on the sun…away from the wall!

On Wednesday, I came up with a brillant idea that I shared with Mrs. O’Connell…to turn the dress up/drama area into Santa’s workshop. Mrs. O’Connell loved the idea and the play area will be transformed after Thanksgiving.

On Thursday, somehow I got left behind from my class at the bathroom…most likely because I turned around to talk to my bestest friend Ava and did not realize my class was walking back to the classroom. Luckily, another teacher delivered me back to class…with a tear stained face of course.

Good news…I have next week off from preschool to recover!!

Oh and big sissy got a rockin report card and has a parent/teacher conference next Tuesday that mommy will post about next week.

Only 4 more days until our LELE arrives…we can’t wait!!!

Halloween...how can it be??

Tue, 25 Oct 2011 23:54:06 -0700

Now I’m not certain where October went, but I pretty much think too many late nights with a paint brush in my hand! I “think” I might be done painting until after the holidays, but we will see. The entire house has been done, except the dining/living room and the kitchen. The kitchen will wait, the dining/living room needs to be completed when we get the ceilings redone, but I’m hoping that will be after the holiday season. Fingers crossed!

Both of the girlies are doing awesome in school. They got to head to Target last week for a special gift, Sarah Jo got a rockin’ progress report and Samantha Jane received another virtue slip. Of course, Sarah Jo picked out a craft at Target and Sam Sam picked out some Littlest Pet Shop doggies, we would expect nothing different from each of them.

This coming weekend is super busy and fun filled. Lots of parties leading up to Halloween! I will be working at both of the classroom parties for the girls on Monday. I can’t wait, it should be a fun time and I’m really looking forward to it!

Tonight, Sarah Jo’s gymnastics coach asked all the little girls on her team to be flower girls at her wedding in March. You can only imagine how excited they all are. The wedding is in March, so we have lots of time to practice throwing rose petals.

Happy Halloween!

Painted.....

Mon, 10 Oct 2011 08:35:54 -0700

Den, family room, new laundry room/bathroom remodel, upstairs entryway, still lots to do, but hoping to tackle the stair hallway today, then on to two closets and the dining and living room….will be painting for awhile!!

Where oh where has September gone....

Sat, 01 Oct 2011 08:47:49 -0700

Oh where oh where could it be…….

So I think it went to school, driving, gymnastics, and a little remodeling! Things are BUSY at the Kujath House…..but they always tend to be….it is life!!

Let’s start off with Samantha and school. So the first week was HARD for everyone, especially for Mommy! The first day was awesome, no tears, all smiles. The second day, not so much. A total meltdown and hanging on to me for dear life….”Mommy, don’t leave me here, I just want to come home with you!!” I totally lost it, tears started flowing for me too, leaving her was one of the hardest things I have had to do in my life. Of course I left her there and went home and cried with Solo for the entire 4 hours that she was in school. Each day after that has been a little better and this week there were no tears at drop off at all. The teacher wrote me an email earlier in the week to let me know she is making great progress in class, participating more, talking more, and even showing them her sense of humor….Jeff said….uh oh to that one…heehee. At Chapel on Monday, she got her first ever virtue slip from Faith Lutheran for using self control at circle time. She is our little creature of habit and likes to sit in the same place during circle each and every time (Jeff said, who does that sound like????). One day, someone else was sitting on the flower, so Samantha chose another spot and earned a virtue slip which is now laminated and hanging prominently on the refrigerator. We have noticed a huge change in her confidence in other areas as well…she is chatty to the coaches and other kids at gymnastics and has now started rockin’ it out on her kart wheels. She is happy and loves to come home and play school with Sarah Jo, of course you can guess who always has to be the teacher…that’s right the big sissy!!

Speaking of that big sissy, she is loving school as well. The only thing we are “adjusting” to is daily homework. The first day she did homework, she said, “This is OK for today, but I do not have time for this every day, I need to practice my back walk overs after school”. Well she has mastered the back walk overs and is still doing daily homework….with a bit of grumbling…but we try to remind her, this is life (we let out the part that homework goes through college…heehee). Her weekly progress reports have been glowing so far and this coming week she is STAR OF THE WEEK. We have some homework to do this weekend for it, filling out her stars with her goals and dreams for the future and then she gets to gather all of her favorite things to put on display for the week. I think that will consist of gymnastics medals and trophies, the dress that her and Nana made this summer, and many pictures of Solo I’m sure. On Friday, Jeff, I, and Samantha get to come into the classroom for the last 45 minutes to listen to her share all about herself and to pass out treats (I will be making brownies per her request). It should be fun and we will be sure to capture some video and pictures.

As for the remodel, we now have a working bathroom downstairs (A LITTLE SLICE OF HEAVEN) and the contractor is moving on to the den. In the meantime, I am prepping the family room and Sarah Jo’s room to paint. I plan to tackle the guest bath after the first of the year. Lots of work, but so worth it!

It is a chilly fall morning here, Halloween is in the air, and we are off to decorate. Life is good!!