We are still having issues with our Sarah. I just know it has to do with the shunt replacement surgery she had. Also she is loosing her hair and it looks like some hair was cut or something. I remember it being that way, but did not think a thing about it a few weeks back. I don't think anyone did it.... it just looks that way.

So I decided to start doing some research on the seizure med she is on the Onfi/Clobazam. There are a few places where hair loss is a side effect... but like other meds there are a laundry list of side effects too.

Also, I signed up for NeuroTalk.org and asked questions on some of the issues that comes with the after effects of surgery.

The are still having issues that replied was so incredible informing. Stating that they had many revisions, and here is a bit of what they said: "First thing I can address is the amount of time it's taking her to recover. There are many factors that go into a recovery time and it sounds like your daughter had a lot of those factors. For instance, the fact that (it sounds like) it takes a while for her malfunctions to be pinpointed. It's the curse of the slit ventricles, (i've got them too). The problem that it poses for recovery is that the longer your daughter was living with a shunt malfunction (headache, dizziness, blurry vision, balance issues)the longer it takes for all of those things to return to baseline. For example, I had sunset eyes and blurry vision for two days before a shunt surgery, and it took two months for my vision to return to normal. It was incredibly frustrating, and I only had that symptom for 2 days before it was corrected! 

Also they stressed that IS major surgery. Here is another part of what they stated. "Another thing you mentioned was that it sounds like she had incisions in her abdomen and head, indicating that they replaced the entire tube. This is in fact a pretty major surgery and recovery should be assessed separately from the short surgeries on the proximal catheter at the end. When new tubing is put in your body many times there is bruising along every spot that they had to jam the tubing through (sorry to be crude but that it literally how they have to move it around in the body sometimes). The small incisions that you see on the outside of your daughter's body, are no indication of what her body went through, and that's one of the hardest things to remember." 

As much as I need and have to hear this.... it still breaks my heart that she has to go thru ANY of this. 

Also they said as for the pains on her head and scalp... this is what they said... "my scalp and incision was EXTREMELY sensitive (and still is). The nurses told they thought it was because we have so many more nerves in our faces so the fact that the incision was so close to my face probably lit up a bunch more nerves. 

So now the question is... if in fact she is still having sensitivity issues with the incisions.... maybe when we do find an OT, we can figure out a sensory plan to help overcome this issue. 

Just wanted to post this while I had a moment of free time and to hopefully think this through and figure out where we go from here. 

Love, 
Vicki

Lately and ever so slowly escalating, Sarah's desire to "want to take a bite" of ANYTHING, whether it be her sippy cup with water, a spoonful of food or even teeth brushing, has become quite a regression. She was doing so amazing before her shunt surgery. So many things seemed to have changed in the last 3 months.

Bath time is literally a nightmare for her. She will scream and cry, but yet still step in the tub. She wont sit down and will cry as if she knows something painful is about to happen. Last bath on Saturday, she did just that and then hugged me for a very long time. Crying with full blown tears. I finally pulled her away and explained to her that she needed to be bathed and I promised it would be super fast. With the rinsing and washing of her hair, then the final rinse... she cried like it was excruciating. As soon as the final rinse was done, I expected her to fly out of the tub. On the contrary... she decided to sit down and fill the tub with water and played for the next 30 minutes. Happy as a clam.

Some may think that this is behavior and some will just excuse it as so and want to move on. I, however, her mom, the person that knows her best, I refuse to excuse it and just brush it off so fast  and will explore every avenue until I have some kind of an answer. With her being non verbal, I would die if she was going thru some kind of pain and did not try to find out what it is and I would be a terrible mom if I did not investigate it the best I can.

She is exhibiting this kind of behavior at school as well. Crying real tears. Crying is not a part of her pattern.Yes, if she does not want to do something... she will get mad and fight it... but NEVER cry like she has.  She is extremely stubborn and would throw a temper tantrum that to cry like she has been.

Here is a before video of Sarah cooperating during a feeding session and there is one a few months after. Mind you we have tried to work with her in the middle of these sessions. She was in the hospital back in June for an emergency shunt replacement surgery because it had become so clogged. Then stayed the next 7 days because she had a virus. This was a HUGE set back for her.

Now here is a video of her having an absolute melt down. We, her parents, do all we can to work with her every day. Even keeping her sippy cup out and allowing her to want it. We present it to her as often as possible, but we are at a loss. Not sure why she is so upset like she is.

Just wanted to post this as soon as I could just in case ANYONE would be able to tell me what they see that I am not seeing.

Victoria

Well isn't life GRAND

So I decided to go back to work. At the time it was not really about the money, yes we always need that, but in addition too, I just needed to get back to being around more adults, structure and just something that was mine. I decided to work at a school, an elementary school to be exact. I was hired on to be a Paraprofessional. I truly LOVED working with the kiddos. I never thought in a million years my entire heart would be into it. I knew that I would really enjoy it, but I truly  found my passion.

Well as life works, and seems to work for us, shortly after, Darin was laid off. Now we were left with no main income and no insurance. I had asked to see if I could have an increase in hours, but that would of meant that I would be eligible for benefits. Well they just did not have a position for me to do that.

Now with Darin home, it was nice and super convenient to have him home when the girls got home and he could meet them at the bus.

Let me back up a bit... our precious and wonderful provider had to leave us for personal reasons. We miss her sooo much... and she still comes to see Sarah. But we wish her the very best in everything and we are keeping in touch.

So with that said..... since there is no one else here in the afternoons.... it was becoming challenging for Darin. I found myself still needing to manage all of Sarah's care. It was becoming so overwhelming and I found myself just so caught in the middle of work, Sarah's issues and plus having to take care of new things with Hannah. I knew that Darin could not manage all of that like I had done for years, so with a super heavy heart, I had to resign. We would for sure be hurting for the money, and I miss the wonderful kiddos from the school sooo much, but my family really needed me and I think FINALLY Darin sees how much I do take care of.

So now, Darin is looking for work. Not sure if he can get back into the profession he was in and if he did, we are worried how steady it would be and if it paid the bills, plus the benefits too are so needed.

As for Sarah, I am getting concerned with her over all health. Since her shunt surgery... she has regressed in her feeding and just seems different.Some good and some things to worry about. I think its just a massive combination of things.... way to many big changes, and since things are stressful here, I know she can feel it.

Sarah was evaluated for an Aug Com devise, to help her communicate and hopefully we should have it before the end of the year. I am going to dive into learning all I can and help her all that I can too. I cant wait for this new one to open up her world... and our world to her.

Hannah is doing well. She is still the out going spunky girl. Now she is in the 4th grade... so different and so much more to do. We are finally getting her on a good schedule and at least at home she is getting better as each day goes by. Her grades are wonderful, math is kind of an issue right now, but we are getting there.

So that is whats going on at the Z house these days.

Have a great night!!!

Yes... its been QUITE a while since my last post

For some reason this did not post.... its from a while ago.
I know its been SEVERAL months since my last post. So much had gone on that I had a mental shut down.
Our house FINALLY became a HOME. Well its always been a home, but now it looks sooo sooo beautiful.
It has taken and its still a work in progress getting moved back in. Majority of our things were boxed up in the garage and the living room. With it being summer and the girls out of school, Darin working and just feeling soo overwhelmed as it was, it was and still is taking literally forever to get things back together. Doing repairs, painting, touch ups and just getting all of our rooms back together along with redecorating made it for a long and crazy summer.
We were not even home a week and Sarah wound up in the hospital again. On the first Friday we were home, in the morning she starting fussing soon after I gave her the first morning feeds. I just thought she was getting board or tired or maybe it was gas. The fussing soon escalated into full blown screaming, crying, throwing herself down on the tile, hitting her head at the back arcadia door. She screamed so much, she threw up her feeding. I could not get her to calm down for anything. I was so scared. I had not seen her like that in such a long time. I just knew it was far more than gas. I yelled for Hannah to bring me the phone and called 911. Sarah was still screaming and I could not even hear the operator. Before I knew it, the paramedics were here and so was Shanon. Sarah was still sitting by the back door and still screaming while they were here trying to get information from me. Finally they started talking to Shanon.
All of a sudden she started slowly calming down and I was able to give them what they were needing from me. But Sarah still did not seem good. We talked about her going to the ER via ambulance, but I choose to drive her since she was calming down.
Once we got to the hospital, I immediately told them "My daughter is special needs, has seizures and has a shunt". The magic words, but honest words works every time. She got a room right away.
I still was feeling it was gas and she was backed up. They ran all kinds of tests, X-Ray, MRI, blood work.... they did it all. I felt so bad for her because she looked like a train hit her and had not eaten since the morning. They hooked her up to an IV too.
So we are waiting for the results, in the back of my mind, still thinking its just gas and she is constipated.
Finally the ER doctors came in and said "We are going to admit her." I was SHOCKED!!! They were not stating exactly why either. I just assumed it had to do with maybe seizures, or severe back up, which she has been admitted for before.
Once we got into the room, the phone in the room rang and it was Dr. Moss one of the neurosurgeons that works with her neurologist. At that point my head started spinning and my heart started racing. He was stating who he was, explaining all his experience, and on and on. All I could hear at the time was "Waaa waaa waaaa". and waiting for him to get to the point. (Not trying to be mean or rude when I say that at all. I was just in a state of shock and panic)
Then he said that her shunt was clogged and they need to do emergency surgery. They were waiting for a room. But things changed.
Later, we were told she will have surgery in the morning at 6am. They wanted to do more tests just to make sure they had all the information they needed.
So the next morning, at 4am she went  into have another xray and MRI. Then at 5am Darin and I met with Dr. Moss. He showed us all her previous MRI's X-Rays and was showing us the differences.
 There was a cyst with fluid build up that developed and the catheter that was suppose to help in draining fluid was practically clogged and causing the cyst to grow… causing pressure. The tubing that drains in her tummy, was practically clogged as well. Lord only knows if we had waited any longer what could of happened. I am just soo grateful that I followed my momma gut. I know in my heart that there is an angel looking after her and us. Soon after the surgery and she was back in her room, she had her color back. She was a healthy color of pink again. Before, she was so pale, ashy and almost looked jaundice. When she finally woke up and was alert, she quickly became the happy, ornery, beautiful sweet stinker we all know and love. Darin was right next to her when she woke up. About 30 minutes later, he got up to get some lunch, We soon noticed that she was very warm and started becoming cranky. Once again a fever spike of 101. So the nurse gave her some morphine and Tylenol and will stay on antibiotics for a while as well…. As it always seems to be with our coincidence QUEEN, she may of had an infection prior to the issues with her shunt or just some virus that flared up along the way. No one really knows. This fever and the throwing up lasted 4 more days. They did not want to release her until there was no fever spikes and she was keeping her feedings down. During the week of being in there, I got extremely sick. I had been up for 30 hours straight, slepted for 6, then back again for another 24 hours with no sleep. I took myself the the ER there, and was diagnosed with Bronchitis and had a fever. So I could not stay with her. I stayed at my moms for 2 days.... just slepted. Between Shanon and her Aunt Chris, she always had some one there. To get to the end of our story.... We came home on that Friday. Sarah slepted on the couch for 3 days with a feeding pump. By Monday, she was getting her strength back. Oh..... did I mention this happened on their BIRTHDAY???? We had a party set and everything. I feel soo bad that the girls did not get to have a party. We still have not had one for them. So much as gone on since then, but I wanted to post this just to catch up. I will post some more catching up in the next few weeks. 

Latest Update

So as of Friday we are starting our 3rd week. We met with the home adjuster and Eric from Patterson Construction  to determine what all the repairs will be and how long it will take. Most likely we will be here one more week. It looks as if we are going to get new tile through out the house except the living room and we are going to paint the girls rooms and the girls bathroom before everything is back in place. That is exciting.
All in all I really can't complain because we are staying at such a beautiful place. I almost feel like a kid again. Biking and swimming practically anytime we want. The old athletic person in me is coming out again LOL!! We will not know what to do once we have to leave. I love love love love love swimming. It is so relaxing, gets the stress out and it wears me out. Just got to find a place where we can go swimming during the summer and just have fun. We have such a wonderful time and it's a great mother daughter, hubby and family bonding time.
It will be bittersweet to leave, but I sooo miss our home, our pets and our neighbors!!!

Here is what our beautiful house looks like now

Well here is what our house currently looks like. Almost like a new home under construction. So much mess everywhere. We still do not have a completion date.

We are all so wiped out! Darin and I just are not sleeping well at all. Miss Hannah woke up SUPER early this morning and is all out of sorts.

Sarah seems to be doing the best, however, when I dropped her off at her class, she then looked like a Mac truck hit her. I felt so bad leaving her.... but she seemed happy at the same time.

Hannah is sooo out of sorts.... the attitude is coming out in full force. Hopefully we can relax a bit today, (GOD fid that) and maybe have some fun taking advantage of the positive side of this and go swimming.

So that is where we are at right now.Please keep us in your prayers as we go through another rough patch. I am hopeful and sure we will get through this soon!

Please pray for us

It seems like our situation is getting crazier and crazier by the day.
We don't know where we're going to be living after Tuesday or Wednesday of this week.
I am still trying to figure out how to continue training with my company, help the kids get ready for their last week and a half of school, and spend time at the house to keep up on what is going on. We still are unsure if this is going to take more than a month.
Please keep us in your prayers that we will get through this soon.

Here is the damage thus far

This is bare concrete. They process has begun. Carpets ripped up and soon the master bedroom, master bath, all of the back of the house will be torn out.... or at least that is what I have gathered for now. So we will be displaced for a while. OH THE JOYS!!!

This is nothing... but I am trying to stay positive!

OUR WONDERFUL NIGHT LAST NIGHT!

OMMMMMMG!

Well life is soo fun her at the Zicafoose house! Last night as we were getting ready to go to bed, went to the back of the house to find our master bath and bedroom flooded with MASSIVE water!! All in the bathroom, most of the bedroom and hallway. URG!!! As Darin was scooping up water, I was saving all I could. It got into our storage closet and hit boxes with many valuables. THANK GODNESS I was able to save 90% of what I could. Today with another day of training, and lack of sleep, it should be interesting.

Sarah had a hard but good weekend

A few weeks ago, Sarah went to the ear doctor to have her hearing checked and had tubes placed. She had to be knocked out for this procedure. Well things seemed fine, so we thought.
The last few days of last week, she seemed like she was getting sick and was unusually fussy. Friday she kept tugging at her left ear. During bath time she was really upset. So Saturday, since I was backed up with house stuff due to training, I asked Mandie, Sarahs provider to take her to urgent care at Sarahs doctors office.
Turned out she has a blood clot in her right ear. She was prescribed steroids and antibiotic ear drops.
She seems to already be feeling better.
Sunday, Darin and the girls took a trip to Luke AFB with their grandparents. She had on a diaper since it was going to be a long trip. When they got home, took her straight to the potty, took her diaper off and it was bone dry. Man did she go! Lol! Shes GOT IT!!! She is still doing AMAZING with potty training. YEAAAA MY GIRL!

Sarah taking a bite of food and not even fussing!

Her is Miss Sarah taking a spoonful of food and not getting all upset. I was holding the camera so its a little funky looking, but as you will see..... its sooo wonderful!!!!!

Sarah having fun with feeding! Yea

The video your about to see is YEARS in the making. I don't want to say much, because it's a surprise. I was sooo thrilled that I was able to capture it and Sarah was for the most part, cooperating. This may be a small step and seem like not that big of a deal to some, but to those who TRULY understand Sarah, this is a HUGE HUGE STEP for her getting closer and getting her one step closer to her goals. If you dont see her in a blue shirt playing with her tube, then click on the wording "Sarah playing with food."

Start of a remolded room for Hannah

Hannah has a new bed, a water bed to be exact, with drawers and storage thanks to our neighbors Kelly and Carl. THANK YOU GUYS!!!  Here is the before and after of her room.

We want to paint and clean up the walls. Add cork for displaying her work and her art and fun things.... its all a slow work in process. Hopefully we will have it done by the end of the year! She loves it and I am sooo happy. Man.... was it work getting it cleaned..... hopefully it WILL stay that way! :-))) 

Another milestone for Sarah!

Ever since Sarah was a baby... she has been rocked to sleep. Not every night, but at least 90% of the time. As she has gotten older and even recently, especially with a new routine, we rock her to sleep maybe 2 nights a week. Well last night was just another typical night, rocking her to sleep. (Its not anymore that she needs it so much, its us, still wanting that time with her)
Alot of times, I will rock her, then she will get up and go to her daddy and he will rock her till she is out. Usually he has a bed pillow under his arm to make it comfortable for both of them.
So last night, daddy was rocking her... all of a sudden she got up, grabbed the pillow, and laid it next to me on the couch. So I placed it under my arm.... she then grabbed it put it back next to me on the couch and got up on the couch, lied down and fell asleep.

What most dont know....is that this is the VERY FIRST TIME EVER, Sarah has done this. I mean EVER!!! For us as her parents.... this is a HUGE HUGE MILESTONE, A HUGE HUGE STEP towards her progressing, maturing and becoming a young lady.... no longer a baby. We were soo sooo amazed she did this and just blown away and soo happy. Sarah is SOOO SOOO much smarter than we know and she is slowly, but surely letting it out and showing us a bit more each and every day. We are so proud of her and love her more than words can say!

Latest News

I decided to add a Pay Pal account for donations for Sarah. Anyone wanting to donate to her and her medical   bills, foods, any need for herect..... anyone can and anything is sooo sooo much appreciated!

Well we've had such a busy week. Tuesday, Sarah had her hearing test where she needed to be put under and she had tubes in her ears. She was SUCH a trooper that day, but by the end of the night, very cranky. Cant blame her at all.

Hannah has been working hard getting ready for the end of the school year. She is doing soo well! This week she has her swim class, like she has every week. We are keeping our fingers crossed that she finally passes this class and she will be headed to the next level.

Darin has been working alot and I mean ALOT. He has been working a 2nd job still doing land surveying. However he is not sure when he will be getting paid for this work. Hopefully soon.

And finally....I had been getting sick.... and that stinks. Today I am finally getting my energy back. Moms are not allowed to be sick... but hopefully the worst is over!!

Also... I was officially hired on at UHaul, working from home, taking truck rental reservations. My training starts next week and it will be for 3 weeks. It is kind of a bummer that my training times will be during school times and not sure if I will be able to have lunch for visit both the girls schools before they get out.... but hopefully I will have enough time during the last part of May.

That is all for now!!!

Great News for Sarah!!!!!!

Well I have such wonderful news to share. I will post this part on Sarah's page as well.

Last week, Sarah had an EEG. It was set up at home. The EEG was suppose to be 48 hours, but overnight Sarah messed with the head gear and by morning it was such a mess. So basically we got a 24 hour and while she was sleeping.

The WONDERFUL WONDERFUL news is that according to her neurologist, he did not see any signs of seizures during this time. The spacing off, the hand and arm flapping, is most likely her stimming or day dreaming, quite possible an autistic characteristic. Not 100% sure, but of anything as long as it is not seizures causing this, then I am soo happy. She had started her new medication just over a month ago CLOBAZAM and I am wondering if that is the one drug helping her. She still is on Topomax, and we are weening her off of Risperdahl.

This has been the most WONDERFUL AND BLESSED NEWS we have had in MANY MANY YEARS!!!! God has answered our prayers. I am trying my best to keep this all positive, but on the other hand I have to be realistic. I am keeping my eyes and ears wide open and still staying alert just to be sure. So as or APRIL 16TH 2012, is the beginning of her seizure free!!!!!

Hello there!

Ok... so here I am.... working on keeping things up and running. Any updates for Miss Sarah can now be found on her page. So this will be a trial and error type of thing, but once I get the notches worked out.... it should be running smoothly.

Well things with the girls have been going rather good. Sarah being bussed to school has been the best thing that has happened in such a long time. I am S-L-O-W-L-Y finding so much more time to get things caught up around here, get on a good schedule and not feel so damn burned out both mentally and physically all the time. School for Sarah has been running so sooo smooth. It frees up so much more time with Hannah. We still have our good days and our bad, but I am slowly seeing Hannah so much more happier. I am not having to ride her butt each and every day like I had before.

Darin has been working alot, thank goodness. He was out of town for a total of 3 weeks. Financially that will help us out so much. But since I am finding more time, I am going to conquer once again the notion to look for work. Ideally something at home. So I am doing lots of looking and seeing what is out there. Hopefully I can find a legit at home job where I can set my own hours. If that goes well, then just to get out of the house, break up the monotony, maybe even super part time work in the evenings. Its all a work in progress.

So that is the latest and greatest with us for now!

Have a wonderful day!!!!!! 

Once again I am here

Ok.... so I am once again trying to make this a regular thing, posting and such.

Its been very crazy since I last posted. Sarah left LIFE after being there since 2007. It was such a hard decision, but there were so many factors to leaving. The main one is that she needed to be more challenged. I feel as though she finally hit a point where she is able to learn so much more than she will show us. She is doing so well in so many areas.

Currently, she is opening up to more receptive language, meaning, when we ask her a question or tell her something, she will do it, if she chooses, or respond in a verbal way. She is taking sips from her sippy cup, with water and with her blended diet. She is allowing teeth brushing, she is getting better with her fine motor skills while using the IPad. Thanks to my brother for getting us one to use for her. She is even making progress with potty training. She rides the bus to and from school and comes home soo soo happy!!! The down side is she is having more seizures lately. We are waiting to hear back from the doctors office on doing an at home EEG monitoring and will be slowly changing med. Other than that things are good.

Hannah, well, she is doing so well too! Getting mostly A's and B's in school. Math is ok, but other than that, her grades are great. She won a free personal pan pizza from Pizza Hut by meeting her AR goal. She is back into swimming and hopefully she will pass to Advanced Stroke. Next month I am hoping to get her into an singing/acting class... I have seen some things similar to comedy fun shows that I know she would love to do.

That's it for now!

January 12 2012

Hello~

Well its a new start to a new year. I hope that this year I will be able to maintain this site and not so much on Sarah's site. It will still be up and running and hopefully I can some how bring both together. Who knows.

Anyways.... life here at the Zicafoose family has been pretty good so far.

First of all, I have to say we had such a WONDERFUL Christmas this year. It really was all about the girls and just seeing the joy and excitement in their faces. Especially for Sarah. Cognitively.... she has come so very far and to see her express such happiness after receiving something she loves is just priceless to us. Hannah was so very excited with all she got too.

We also had a family "adopt" us for the holidays. George and Bonnie Page and family invited us into their home for dinner and to share in the evening with their huge family. They welcomed us with open arms and were so genuine,kind, and very giving.

They gave to so so many things that we deeply needed. Soo many essentials from laundry soap, bottle water, paper towels, toilet paper, food, to dog food to gift cards so I could buy Sarah's foods, to clothes for the girls. Because of their incredible generosity, we were able to purchase gifts the girls have wanted all year. I was overjoyed to see them this happy.

We also were blessed once again by our "Secret Santa". Because of them, we got an even bigger surprise for the family.

Several months ago, we had one a kitchen makeover from Republic West. I had entered a contest Traumatic Brain Injury, that Darrell Ankarlo started.

Well we were the first winners and what we got, which is amazing and beautiful are cabinets where our desk area sits. It has freed up so much room and its now a combo office/supplies for Sarah and its all hidden. We just love it.

I am still working on this blog and trying to figure out how to manuver thru this. Hopefully I can keep it updated more often than I have.

Have a wonderful day!

Victoria