Journal
April 7th. 2008
Well here it is finally, a website just for Sarah. It has taken a lot of time to build and we still have a long ways to go. But I am proud to say we are up!
Sarah had a good day today. Not much to report. I am taking her to a place called the
April 9th. 2008
We had a good appointment with Dr. Chao. It was evident to her that Sarah does have autism, but because she has so many other issues, it's hard to say how severe. But we are very glad to finally get the proper diagnose(s) for Sarah. This will help her get the proper services and continue the she so desperately needs. We have already seen extreme progress since she went back to Preschool this year along with L.I.F.E. We feel totally blessed that the people in her life has her best interest at heart. She could not of ever gotten this far with out all of them.
We will get an official report here in the next few weeks and meet again next week with Dr. Chao.
Sarah also has an upcoming surgery, a minor one. Its called a RECTAL BIOPSY. The biopsy they take is to test the nerves to see how her lower is neurologically.
Well that is all for now. As usual.... we will keep you posted!
Love,
The Z family
April 13th. 2008
It has been such a crazy weekend. Hannah had a birthday party to go to on Saturday...which I surprised her with. I did not tell her till that day and she was so excited! It was really nice to get out, to see Hannah having fun and to get to talk to adults and just have a good time. Hannah's friends parents are all so fun and great to be around.
Sarah had a pretty good day herself on Saturday. Her hippo therapist
(other words horse therapy) came to the house to work with her on her augcom device. Its a computer board with an LCD screen that helps children communicate. She is teaching Sarah how to use it and her dad and I need to really learn it as well and use it on her as often as possible. So she had a good productive day and she got to spend some one on one time with daddy.
Sunday was another story. She did have a bm for a few days and we have to give her things to help her go. So we did...(real fun) and she was just crying and screaming and we could tell in such pain. I put her in the tub to see if that would help her feel better and is must have helped because she was able to get all the gas out which was the thing causing her so much pain.
We are so frustrated with the GI issues that she has. I hate seeing her in such pain and I am sure its no circus for her either. She will be having the Rectal Biopsy next Tuesday. So hopefully that will give us some kind of answers.
We are so concerned that she is not gaining the kind of weight she should be and we need to talk to her GI about more alternatives to getting some weight on her. She is healthy... but the weight we are concerned about.
That's all for now.
Love Vicki
April 16th. 2008
Well... we went to the 2nd to the last meeting for an overview of the evaluation for Sarah at
As parents, family, caregivers, providers and teachers, we need to speak to Sarah directly. We need to acknowledge feelings and talk her through her feelings. We need to tell her what to expect, ie... going to the doctors, administrating medical necessities. When she does something that we want her to do..... make a big deal of it. Give her choices, something she really likes and something she really does not like, to teach her choices. Well the list goes on and on...but these are just a few.
Sarah IS in there...it is just helping her come out. There is a lot that we ALL need to work on to help her.... its just learning the techniques and the therapies that are appropriate for her.
Other than that....she is doing quite well right now.
Thank you all for your thoughts, support and continued prayers. We love you all!
April 19th. 2008
Well we had our last appointment with Dr. DeOcampo and all went very well. My dad and step mom came in from
We also had a meeting at LIFE with the providers today. That went really well and it was very encouraging. One of Sarah's providers, Melissa, who has worked with Sarah since she was just a baby, has put together a program for her. This is something that I know will be beneficial for not just her, but for us all. Coincidently, Melissa got the programs together just as Melmed center suggested, but with out me having to go into specific details. That was so nice, so maybe not as complicated as I though.
The programs on paper look simple but intimidating... however I know that with consistency and hard work on our part it will break through her barrier.
They are to FOLLOW ONE STEP INSTRUCTIONS, MAKE EYE CONTACT, IMITATE ORAL MOTOR MOVEMENTS, COLORS, (RECEPTIVE AND EXPRESSIVE), MAKE A CHOICE, POINTING TO DESIRED ITEMS, IDENTIFY FAMILIAR PEOPLE, AND IMITATE ACTIONS AND OBJECTS. Not just all of these but working on behavior which will be the hardest for us to do as parents. Specifically us learning to reinforce good behaviors and not acknowledging bad behaviors.
It is something we ALL need to work on and to learn. We CAN do it.
Thanks again for all your messages, love, support and prayers and we will check in again soon!
Love Vicki
April 25th.2008
Hello,
Well the last 3 days have been the hardest days we have had in YEARS!!
Sarah went in for a simple procedure, the rectal biopsy. We took her in Tuesday morning at 8am and the procedure was at 10:15. Everything seemed to of gone smooth until we got her home. They said to expect a small about of bleeding, but that would be about it. On the way home Sarah had typical "Sarah diaper" ( her typical diarrhea kind). Once we got her home, which was about 12:30, we went to change her and noticed some blood, more than we expected in the poopie diaper. We were surprised, but not shocked. We got her cleaned up, and since she was fussy, I put her in her bed and went to go to get a feeding ready. She had not had a feeding since the previous night around 6:30 pm, so I knew she had to of been super hungry. About 20 minutes later I go in to her room to feed her and here is were our nightmare began. I walk in, and saw her sitting in a pool of blood. It covered about 2/3 of her mattress. Sarah was just sitting there playing and did not seem a bit phased at all. I screamed for Darin and when he came into her room he too became freaked out. We grabbed a blanket to pick her up and brought her into the kitchen. As Darin was carrying her into the kitchen, she was dripping blood. I called 911 and in a blink of an eye they were here. During all of this Darin was trying to get a hold of her doctor.... finally he got a hold of someone and they said to take her to the nearest hospital since Phoenix Children's is about 45 minutes to a hour away. Once we were at Mercy Gilbert, they started an IV and did all the routine assessments. She had another diaper a while later and that one was looked like bloody pudding. (sorry for the graphics). Her blood count was starting to go down. When they first did a blood draw, she was at a blood count of 12. A few hours another blood draw was done and she was down to 8.
So we waited at Gilbert Mercy till 9pm. After hours of the ER doctor trying to figure out what to do with Sarah, it was FINALLY decided that we go to Phoenix Children's. The ER doctor had said that we were going to have to go to the Emergency Room. I had a fit and demanded that they have a room for her. Being that we had a nightmare experience at Phoenix Children just a few months prior, I knew how they worked. So that was one other reason why we waited so long at Gilbert Mercy.
About 9pm we were transported to Phoenix Childrens and they did have a room ready. After all the assessments and the IV started, we were all about to calm down. There were doctors and nurses in and out for several hours, but we were finally getting a bit relaxed.
Sarah did not fall asleep till 3:30am. She had been up practically 24 hours.
Then 7am came and we talked to another doctor and even more nurses and they did vitals, luckily Sarah did not wake up.
At 8am, we saw her doctor and she apologized and just could not understand how a routine procedure could get this bad. She she said what happened is that the snip she did must have hit a blood vessel, and that they were going to need to go back in and see exactly what happened and sew her up. They also wanted to do another biopsy to because they did not get enough the first time. They were getting this biopsy to test the nerves. So she was going to need a blood transfusion. Sarah was still relaxed and chilling.
8:30 comes and the new staff came on and then decided to move us. We were told that it was a room where they could monitor her closer. So we agreed. We did not know that we were being put in a room that was the size of a closet. I was furious and Sarah was screaming and inconsolable. They had given her Adivan twice earlier because they did not have access yet to the seizure meds she needed. So she screamed and cried and we could not get her to calm down after the move. Again they gave her Adivan about 10am I asked about the blood transfusion and they did not see it in her charts. I lost it again then and then 2 hours at noon is when she got it. The Adivan eventually calmed her down.
We now were waiting for her to go back into surgery. But had to wait to see if her count was going up after the transfusion. So we waited again. Then they came and got us about 3pm. She went in for the second surgery. It was about an hour process.
Once she was done and in recovery, we got to see her. The surgeon came in a while later and explained what had happened. The first snip did not heal and the site did not clot all the way. When she checked the clot Sarah began to bleed again. So she had to sew up that site and then took another biopsy sample because they did not get enough the first time. Sarah finally woke up and eventually went to a room where she we would stay another night. It took a long, long time for Sarah to get settled. She was screaming and crying again and they finally gave her morphine. It was a drip, not straight into her IV, so it took a LONG time to hit her. It was then that we found out that Sarah's blood count was at a 7 just prior to the blood transfusion. We were NEVER told that in the ER. Oh there were soooo many issues we had with them!!! More that can be said here. One of the nicest thing that did happen is that her pediatrician, Dr. Ciminello, who works with her primary doctor came and surprised us with a visit. I thought it was so wonderful to see a comforting and familiar face. This is not really his neck of the woods, but it goes to show that Sarah is truly loved and cared about too.
To make this long, long story short..... she was finally released around 10am the next day... Thursday. We got her home and immediately gave her a nice warm bath...well mommy and Sarah took a nice bath together and got all cleaned up and I know at least I felt so much better. We gave her a feeding and her Tylenol with Codeine and after a while, she was settled in her bed and Darin and I were able to relax a bit. She did have another mild poopie diaper and I'll tell you what... we watched her close.
Hannah was with Grandma Karen this whole time and we missed her so much. She was missing us to. So Karen brought her home and we all just kinda hung out, ate dinner and finally got some rest.
Today she still was a bit off, very week and still really fussy... but we took it easy. She had a follow up with her pediatrician today too and did another blood draw. We have not heard back anything yet... I guess no new is good news. She is now resting and literally passed out around 7pm.
So hopefully this weekend we can catch on things around here and just have some family time and get her up to feeling better and and getting her strength back.
Well... that is really all for now. I will as always keep updates here.
Please feel free to call me if you all have any questions. Please keep us in your thoughts and prayers too. At this time we really need all we can get.
We love you all!
Darin and Vicki
April 30th. 2008
Ok...its been a week since Sarah's surgery and all seems like it's getting back to normal. She is still pretty week and has lost even more weight.
Except for today.... she has been in a SUPER GREAT mood the past 2 days. She had a wonderful session at LIFE yesterday and even getting 40 minutes of "table time" with her...which for Sarah is marvelous. However.... today was really weird. Last night she went to bed rather late for her around 9pm. She woke up this morning just in a daze and did not snap out of it even after going to school. She was just in some kind of unexplainable funk. When she got home from school she was still in a daze. It got worse, so we took her to her doctors. When in the car... she cried as if she was in pain and was unresponsive and would not look left. We got an early afternoon appointment. As soon as we took her braces off in the waiting room...she all of a sudden just snapped out of it. Went to see the doctor and he totally checked her out all was fine. She was right back to being sweet, determined, loving and her normal self. So we wound up taking her to LIFE and had a great afternoon. We picked her up a bit early too . She is still fine but just a few minutes ago... she had a seizure. So we are keeping a close watch on her.
Darin and I have been talking about switching GI docs. We need to get in for a second opinion... then we will go from there. I spoke with a parent of a special needs child who has a GI who has had the greatest experience with this doc she sees. So we will check her out for ourselves. We just hope and pray that everything stays calm till at least we switch.
That really is it for now. Again Darin and I really appreciate all your thoughts and prayers.
Love,
Darin and Vicki
May 16th 2008
Things here in the Z family have finally calmed down. We are getting back on track with daily routines and schedules. Sarah is doing so great! She is clearly feeling better and has been in a constant happy mood. She has been able to "Sarah" diapers on her own... 3 times since the surgery and that has been such a blessing. Who would of ever thought something like that would be a blessing...(lol) We have even noticed some weight gain too. For the past 6 months or so she has struggled with weight being anywhere from 28 to 30 pounds. But the past few days.... she seems to be a bit heavier. She has been showing so much affection and been so loving and funny. She has been going down to bed with out a fuss too. Sarah is even trying to interact more with her sister Hannah and its been so enlightening and heartwarming to see. Her teachers and her providers have been raving as well on how great and cooperative she has been.
So between the increase in formulas, meds, and especially all the prayers, we are seeing a happy and healthy child.
Thank you so much again for everything and all the prayers!
Love,
The Z family
May 16th 2008
Hi everyone!
I know its been a while since our last update. I guess the old saying is right.... "No news is good news". Since Sarah's procedure, she has been doing sooo well! She has been very happy, gaining weight, not constipation issues at all. As a matter of fact it has been the opposite. We were at a doctors, a chiropractor that does not crack, but does find the nerve interference and uses pressure to release it. Our neighbors father is whom I am referring to. We thought we would check it out and see if this is something that might help. While discussing Sarah and her issues with the doctor, especially the constipation issue, she was walking around his office and suddenly stopped. Out of now where, as we were discussing how bad her constipation gets, Sarah has a massive diaper. I was sooo embarrassed and felt so bad. The flooring was carpet to make it worse.
After everything was all cleaned up, we continued are talk. This was just an evaluation, so nothing was done. We are still talking about pursing this but after Darin gets back to work and we get our insurance again.
Besides that Sarah has been doing so well. She is babbling a lot and I am trying to capture just some on video, but every time I pull out the camers, she stops. She is finally gaining weight, walking like crazy and has become more receptive to trying new things.
School will be ending in a few weeks and luckily we still have her hab center she will be going to. She loves to stay busy!!
That's about all for now. Take care and we will keep on posting!
Love
The Z family
July 18th. 2008
Well, I know it has been several months since I last updated everyone. I guess no news is good news....right? Well for the most part. We have been soooo very, very busy this summer.
First Darin was laid off from his crew chief job where he had been for over 4 years. Thank Goodness he was able to find a different kind of job as a
We hired another Respit provider Dina. She is helping us on the weekends and it has been great! Darin is gone most weekends now. She is a very sweet, mild mannered and soft spoken gal. She plays with Sarah and works with her too. Sarah really has taken to her and so has Hannah and it helps me out a great deal too. I am able to get things done too... Yipee!!!
Well... to update on Sarah. We really went thru a very rough patch. The first part of June, I was at my busiest and craziest. Our 2 other respite providers were on vacation at the same time and Darin just started his new job with the funky hours. School was out and kids were board crazy and some days really out of control.
Sarah had started on another seizure medication called "Keppra" in late May... the drug from HELL. Because the Lamictal she was on, she was still having seizures and we were worried that they were slowly but surely coming back. She had been on Keppra before as a baby and boy do I remember the side effects!!!! I had warned the doctor and Darin that when she was on it as a baby, she had the worst behavior issues and it was awful not just for her, but for us as too. Well how easy daddy forgets this. So I reluctantly agreed..... when will I ever learn to listen to my inner self??? After a few weeks of being on the full dose, the same exact time both providers were gone, Sarah's behaviors were soo bad, she was angry, hard to deal with, uncooperative not just with me, but with the therapists as well, hitting and bitting her self, throwing temper tantrums, and they were soo much worse now that she is older ... I thought I was going to loose my mind. She was just not happy at all. Plus Hannah was getting the blunt of all the backfire. I was finding myself yelling at her, getting upset with her over silly things and majority of the time... it was over something so easily correctable. I never felt so alone, so full of guilt, frustrated and so so so extremely helpless and exhausted at the same time. I was mentally, emotionally and physically drained. It seemed there just was nothing at all I could do to make Sarah feel better. I finally called her neurologist who just happened to be on vacation too and asked his nurse to please allow me to wean her off the Keppra. I basically begged her and told her everything that was going on. Thank Goodness she understood and gave me the go ahead and how to do it. Things were getting soo bad that I asked my mom to come out to stay with me for a few days to help. I was terrified I was going to loose it. I not only needed help with Sarah but both of the girls, I was backed up on housework, laundry, paying bills ect.... I was feeling so very, very, very overwhelmed. I needed some one to spend time with Hannah to make this ordeal some what softer for her and I really needed emotional support, a venting board, a friend and my momma. I am so grateful that she stayed with us for a few days. I could not of gotten thru that hard time with out her.
The first week after she was completely weaned off Keppra, she had some very strong and different seizures. But then out of no where, my little girl came back..... and even better. She started showing happy behavior, being extremely cooperative, loving and affectionate and even trying to talk and really communicating by showing us what she wanted and did not want. She was sleeping better too. Ohhh what a relief. Around the same time, we all came down with the stomach flu. She had it first and had it the worst and the longest. She was loosing weight, too. We took her to the East Valley Urgent care and they took x rays of her stomach and she was not backed up. Just still had the virus. So we waited that out too and did what we had to do, lots of Gatorade and sleep. Prior to all of this, her hippo therapist had given us 2 cylinders of dehydrated powered green veggies and fruits. After giving her that in her formula for a week, she started having really super great but extremely messy bm's, she was and still is gaining weight and looking healthy and I am sure feeling better than ever before. We are still giving this to her along with fish oil and hemp oil. She really is a sweet and amazing girl. Her behaviors proved she was feeling wonderful.
We just had the girls 5 year check up and the doctor was so pleased to see Sarah looking vibrant and she is now almost 33 pounds. Almost 5 pounds she has gained since Mid April. All in part to her hippp therapist giving this stuff.... not her GI who was doing nothing but hindering her.
After the nightmare ordeal we had in April with the rectum biopsy, we are scheduled to see another pediatric GI for a "second opinion" in August. I hope and pray that this one will work for her.
Sarah will also start Kindergarten in just 2 weeks. She will go part time and still go to her hab center. My babies are growing up so fast!!!!
Well that is it.... for now... and it is a lot I know... but had a lot to catch up on.
Love always,
The Z family
September 5th. 2008
Hi everyone!
Well its been a few months again... but we have so great new to report. Since the last update... no trips to the hospital, no real crazy days or night.... just smooth sailing for the first time EVER! Really!!!
We have been taking one day at a time and just really trying hard to be more focused.... (lol)
The girls started Kindergarten at the end of July. Sarah going only half day then to LIFE, her hab center, the rest of the day. Her schedule the same, just every day at the elementary school.
Hannah is full time Kindergarten, and boy does she love it and it has been challenging for her which is great. Its only been over a month and she has began to read, learn the Pledge of Allegiance, and loves doing homework. She is going full day and rides the bus to and from school. She has also made some friends she talks about all the time. Her teacher is very great!!! We are very proud of Hannah!
Sarah Kindergarten, not so much. When we went to MEET THE TEACHER day, the classroom was in chaos. I think they were still trying to get the class organized. We were patient and understanding to what was going on up to a point. We realized basically, the class was more or less babysitting. We saw the kind of work that her preschool did and we assumed that the Kindergarten class would be the same. So we gave it 3 weeks, and then looked elsewhere. I had asked her hab center about their school program and on that day, they had said that the funding was taken away and could not offer it anymore. I was soo sad! Then the following week we were given such great news! Tom Horne, who is the state's Superintendent, found the money and transferred the funds. The funds became available and LIFE was able to have school at their facility. It is considered a private school for special needs. Sarah will basically get one on one, work on fine motor, gross motor skills, work on expressive and receptive language, life skills, wonderful circle time, and they will be doing what is called Webabbls which is a
· Quick data entry of assessment results
· Customized report generation
· Color-graph assessment results
Video examples of assessment tasks
Ability to share student data with authorized team members and parents too.
You can find all the information at http://www.behavioranalysts.com/webablls/
So anyways.... she starts full day at LIFE this Monday. She will have all her services there too, all therapies there as well. We are really going to miss the therapists that have worked at home with her on a one on one basis, they have been with Sarah for most of her life, but we really feel this change is good and we feel this is going to be the best fit for her.
Sarah did see her new GI in August. He is really nice and I think a change is good. She also has a feeding therapist that works at LIFE and we are going to track all her issues with feeding to make sure she can physically make progress. We are so glad to say she is moving FORWARD!!!! YEA!!!
Sarah is walking full time... NO MORE
We are soo very proud of Sarah and all the progress she has been making lately.
So that is really it! Thank GOD, nothing negative to report. We are still hoping and praying that Darin is able to return to the kind of work he had been doing. He really misses the normal routine and the steady income, and the health insurance. We have been really pinching pennies and its been tough, but it has made us stronger.
We love you all and again THANK YOU so much for all your thoughts, support and prayers!
September 19th 2008
Hello Everyone!
Well here it is 2 weeks later. Sarah done such amazing progress since she started at L.I.F.E.'s Academy. She has a one on one aid, Darlene. She is so kind, sweet and just wonderful. I believe all the aids basically work with the kiddos, but mainly Darlene does. Louise, who is the main teacher works with her to and she keeps me closely posted on Sarah if she is having an off day or is just not feeling well. The first week, we talked a lot and gave her helpful hints for them to work with her.
I filled out an WEBABBLS evaluation to give them a baseline about Sarah to help them start assessing her. It seems to be working so wonderful!
It seems as if it has taken Sarah just these 2 weeks to get used to the new schedule, but she seems to be really adjusting well. When I go to drop her off, she has started this thing where she will just fall on the floor and lay there for a bit. Nothing is wrong, she just seems to like doing that.
We also are changing the way we are feeding Sarah. Dawn, her feeding therapist saw how she was being fed via g tube. We were for years and years, pushing the formula into the tube by the syringe. Well to my surprise, that is not the right way to feed her. She showed us how to gravity feed her instead. This has been a miracle! We never realized what we were doing was wrong. Dawn explained that feeding her by gravity naturally allows the fluid go into her stomach and naturally expands her stomach, where as feeding her like we were doing was shooting it into her stomach, which unnaturally expands the stomach. This is most likely why she has been having so many GI issues.
Since the change in feedings, not only does it take a much shorter amount of time to feed her... (45 minutes vs 15 minutes) she is so much more happier, hardly any crying or fussy spells, no throwing up,she is gaining weight and best of all HARDLY ANY SEIZURES. Well they are so much less, than ever, that we hardly see her have one. Once in a while, when she is very tired we have noticed recently. The providers are able to work with her and she is able to work with them.
We went to the neurologist on Thursday, and her current weight is 34 pounds. Darin and I were so happy and we explained to him what I stated above and he is not going to change anything at this point with her meds. Just keep it all the same. Like the old saying goes "IF IT AIN'T BROKE, DON'T FIX IT."
Her sister Hannah is doing sooo great in kindergarten. She is learning to read, to write much better, and even learning math, even Algebra. She seems soo happy, but is going thru a shy phase. She is such an anxious learner and love to do the workbooks we have at home for her for practice. Hannah is so smart, funny, loves telling jokes, even if they do not make any sense. Darin and I have surprised her for lunch and she is soo happy and thanks us for meeting her. She has the sweetest classmates, they are so sweet and funny too. Her teacher is totally awesome as well. I am very happy for her.
Gosh... my girls are growing up!!!
So that is the latest and really the greatest news yet. Thank you for all your thoughts and prayers and we will keep you all posted.
Love,
Darin, Vicki, Hannah and Sarah.
Sept 20th 2008
Just a quick note.... Grandma Karen, Aunt Chris, Hannah, Sarah and I went to the Shriners Circus today. It was a warm day... not to hot. We went early and had a great time. Sarah seemed to get a bit over heated, and gets very anxious around crowds... but for the most part did good. Hannah had the best time. She got to ride a horse and so did Sarah. Hannah even rode an elephant! She also got her face painted too. The best part was when her and I met Sheriff Joe. We really like him. Anyone that lives in
I was very happy to be able to go to this circus. It is very special to us. The Shriners help children up to the age of 18 with orthopedic conditions, burns, spinal cord injuries and cleft lip and palat. They receive all care in a family-centered environment at no charge – regardless of financial need. Sarah has been excepted for orthopedic issues. She has problems with her hips and walking correctly. We are so lucky her orthotist referred her to them. So we want to give back and support what we can.
That is about it for now. It has been a long day and we are all pooped. The girls are sleeping ever so peacefully. I even had some coffee when I got home...something I never do, but am ready for bed soon!
Have a great rest of your weekend!
Love,
Vicki
Oct 1st 2008
We had another appointment today with Dr. Dr. De Ocampo from the
Sarah has a "boyfriend" at LIFE This cuter than cute boy John Paul, just pawns after her and I think she knows it. She plays hard to get. Sarah does not resist him or get mad like she normally would when a child tries to interact with her. He tries to pursue her so sweetly and affectionately. He will follow her around, trying to hold her hand or hug her...she just smiles and turns the other way. She is not scared does not act like she wants him around her... she just will smile and keep walking around. I can tell she likes him being around her, she is just not quite sure how to act. She wants to act or "interact" but I think she is being a bit shy or as I say, she is "playing hard to get" One of the providers, Sunnie... said they are like soul mates and they are so funny together. It was so heartwarming to see the both of them together. Sarah does not even do that with her sister. So I think that is something I am going to talk to the therapists about is getting both girls to interact with each other. Hannah wants to play with her so much, but she is used to how Sarah is and so are we. We wish so much that they would interact and play and yes even fight like sisters... one day... will I be eating my words???? I sure as heck hope so!!!
November 5th. 2008
Hello,
Well here is another update.... pretty much short and sweet.
Things have been pretty steady for Sarah and us lately. Which is so great. Nothing super important to report, but great things to report.
I recently posted a video of Sarah babbling and saying "yea-yea" and responding accordingly to my requests. It was sooo wonderful to hear her sweet voice. She is still growing and becoming more and more vibrant and healthy and growing. Again, all in THANKS to Dawn her feeding therapist who had us change the way we were feeding her. We have been getting great reports from all her therapists at LIFE and at her Hippo therapist. She gets so excited when we get to the doors of the Academy, and starts babbling like crazy. She heads right for the big exercise ball and walks around and the teachers at the Academy take such great care of her. Darleen, the teacher that works with her, has so many years of experience in working with special needs kids and adults and I am so thankful to her that Sarah has her to work with.
She is willingly playing with baby food on her tray, feeding us dry snack food and still allowing us to massage her neck and face. They are small steps, but they are steps that will lead one day to her eating real food.
Sarah is scheduled to see the dentist at a surgical center in a few weeks. She has a few visible cavities and some decay, so they will do the x-rays, fillings, cleaning and even put a sealant on her teeth to prevent futhur issues.
Rather than that.... she is doing so great.
Halloween was nice… uneventful.... but nice. Hannah went as a scary witch... and Sarah went as a princess. They were both cute. She rode in the wagon for at least an hour and a half and it was about 8:30 pm when we were done. Hannah rode in it a few times... but she is the one who rang the door said "Trick or Treat" and she even on her own... told everyone "Have a happy Halloween". She was so funny. But boy, Sarah was mad as can be when it was time to go inside the house....so we took her out again for a while and visited with the neighbors. Finally we had to put her to bed and she passed out right away. She was so cute. I will get those posted as soon as I can.
That is about it for now.
Love to all!
Darin and Vicki
November 5th. 2008
Before I begin… I want to share with you that Sarah is slowly, slowly, slowly, progressing with feeding… but she is progressing. The other day… Sarah was with Melissa – her habilitation provider… during her feeding. As she was administrating her feeding….Melissa was eating rice cakes and handing it to Sarah to feed to her. She was doing it with out a fuss or fight and was playing and laughing and having a blast. Dawn her feeding therapists has pictures so if you are interested in seeing them….. I would love to send them to you. It is really great!
Today was an amazing day for Sarah too. Darin and I both were able to attend her feeding session at Laurens. She sits in this chair that attaches to the table so it is hard for her to move and squirm… but she is completely safe and comfortable.
Dawn has been working on several techniques with Sarah and she is slowly becoming more and more trusting.
As we sat and watched… Dawn had put some applesauce on the table, and Sarah began to play… then she had given her some Cheetos to feed to Dawn and she actually cooperated and fed her and contented to do so and still played with the applesauce. Then Dawn took a toothette, which is a small square sponge on top of what looks like a lollypop stick. She will if she can, tap Sarah’s chin, sides of her cheek and lips 10 times and stops, and repeats this on the different parts of her face. Sarah is not only allowing that, but even wanting to do this her self. Then the biggie….. there is a candy flavored spray that she uses to give the sponge a smell. Like strawberry, or apple or berry ect….. Sarah gagged a bit but did allow it to tap her chin and she did it again by her self and the most amazing this was…. Sarah licked the sponge for just a split second!!!!! It was grand!!!!
So our priority is to now plop food on her tray and just be as fun and messy as it as she likes and to give her big snack items to play with and to feed to us. She is really doing so well we just have to let her have all the messy fun she wants.
Even on family dinners, she is required to play and interact and be messy. We do not care how messy… of course with in reason… but the goal is to show her that food is fun and that there is nothing to worry about.
It was a great day!!!!
Love,
Darin and Vicki
November 19th 2008
Well its been 2 days since Sarah had dental surgery. Not so much "SURGERY" but she was sent to a surgerical center to be put under to do a cleaning, xrays, fillings and a sealant on her teeth. It went very well. She came out of it really upset and I am sure starving. By the time we got home and settled it was close to 3:30. She had only 2 feedings and went to bet with out a fuss. Then later on that night I went in to feed her while she was sleeping and she woke up. I waited for her go to back to sleep and she was awake till about midnight. I got up gave her a feeding and finally she went back to sleep. We let her sleep in till about 9am and she was in a good enough mood to go to school. All is back on track.
She will be seeing her GI and her Orthotist tomorrow so not school for her... only horse therapy in the morning. At the GI I am going to see if we can get a referral to a dietitan and see about starting the BLENDED FOOD DIET where we take real foods and blend them up and feed her. If not this formula could stunt her growth. The Orthotist she will be getting a hand splint for her left hand. It will be a long but important day.
We will keep you all posted! Please see the recent photos on her progress with playing with food!!!! Yea!!!!!!!!!!!
Love,
Darin and Vicki
December 16th 2008
Well its been almost a month that has gone by. Not a ton to report. Sarah is doing well...she had a bit of a cold, but she is over it for the most part. She is however teething!!! Poor girl! She has been chewing and chewing on her hands and once again it was a guessing game.When she was sick, we thought it may of been an ear or sinus infection...3 times to the doctor and each time he said it was just a cold that had to run its course. This past Friday,I called the dentist to see if he could take another look at the xrays. Well guess what?? Her 6 year molars are coming in and I am sure they are just so painful. So we are keeping her on motrin and tyenol for the next week just to take the edge off.
Sarah has been doing very well in feeding therapy. She is now putting her hands in the food, mushy food and not screaming like she does. She is allowing facial massages a bit and as long as we sing songs and make it fun and use the count to 10 method.... then that is half the battle.
We were at the mall the other day...just getting out of the houe and getting some exercise. Well... I was walking along side of Sarah and she kept pulling me down so I could kiss her on her cheek. She did this at least 10 times or more. Then she had done it again, pulling on my hand.... but this time she gave me a kiss on my had. It was real quick and it seemed intential. I was sooooooo shocked. Sarah does not give kisses at all. She will give hugs and and pat you on the back when your holding her. But to give kisses.... she is just not do that. But SHE DID... and I will treasure that moment forever. She is just blossoming and her wonderful personality is coming thur more and more each day. I so Thank Laurens, and the Academy she goes to for giving me my daughter.
Hannah is doing really well lately.... well... in a sense. She is just becoming such a grown up.... to fast actually. But there have been some issues at school... mainly just talking and talking and talking.... not listening.... being over silly during work time and just talking. We sat her down and really had a good talk with and created a TO DO chart.... a behavior chart and she has one at school. Since it was started.... she has become so much better in school and after a meeting with her teacher... she say she is such a bright and loving girl. Hannah has taken uder her wing a boy with vision and hearing impaired. I think he has some learning issues.... but Hannah is there to be his buddy and really takes care of him. She is like a little momma to several kiddos in the class. I am so proud of her.... so proud of both my girls. :-)))))
Well that is all for now... we will update after the holidays.
Hope you all have a wonderful MERRY CHRISTMAS and an HAPPY NEW YEARS!!!!!!
Love,
Darin, Vicki, Hannah and Sarah
December 29th 2008
Well, here it is.... a few days after Christmas and a few days before New Years. I wanted to take a moment and first say a HUGE "THANK YOU" to the "Friends of Santa." Darin and I were so incredible moved and so touched that complete strangers reached out and gave us such precious and memorible gifts. For this.... we want you to know that we appreciated all you have done for us. This year, money has been tighter than we ever thought possible. We have been really put to such tests. But I knew deep down in my heart we would all get thru this. We just needed to support each other and really tighten our reigns. Thanks to the "Friends of Santa" Darin and I were able to give a bit more to our girls this year and just to see the expressions on their faces when they opened their gifts was so rewarding and made all of our hard times seem become a distant memory.
So with that said.... the girls really did great this year. Not just with gifts, but with attitude. Both girls were on thier very best behavior. Sarah especially. This has been the first year that we were able to get thru all of the dinners we had with the grandparents and aunts with out any fussing, crying or inconsolible outbursts. Sarah was happy, content, very well mannered and just an all around great girl. We were all so happy and pleased that the dinners were very enjoyable.
Hannah was just her usual goofy and silly self... making everyone laugh and she keeps ya on your toes. She even coined a phrase.... on Christmas Day, we were at Aunt Chris house. It had been raining on and off and she said to someone... "Your sweating like a duck" This means that you had been rained on a bit. It was soo funny.
Sarah is sooo comming out of her shell and just growing up. She is so very aware of her surroundings and what is said to her. If I ask her a question that I know she wants... she will sign immediadtly or make a sound... close to yes. If I ask her something that I know she does not want...she will start to sign...then pause...then ignore me or she will sign "All Done" meaning "No" or she will make a sound. When I then respond to her answer, sometimes she will look at me and sign either "yes" or "no". She has been doing this more and more lately and it is just such a blessing that we are finally able to see more of her, to see more in her soul and who she is. It is an amazing and such an indescribable feeling. There is starting to be more that just a connection. She is grabbing me more to kiss her... about 100 times a day. I love it so much, but the center is wanting all that is involved with her to sign "Kiss" if she wants one instead of grabbing the persons shirt. Sometimes... if I am not careful...people get a peep show. (lol)
The best gift for Sarah was the gutiar. I sware, if I was able to teach her to really play a song, she could do it. She loves to strum it and even knew how to use the pick. She really loves all her gifts, I think she is just so overwhelmed with the amout and which ones to play with. She has had the same toys for soo many years that the new ones have been hard for her to get used to. We just will play with one new one each day. She got a small organ that I have learned "Twinke Twinkle Little Star" and I am trying to teach her that song. She got a singing snowman that she just loves to hug. We will get to the rest as the days go by.
Hannah got alot of Hannah Montanna stuff and she is in hog heaven. She got a reading book that has a pen that reads along with you. She is anixous to start that book and hopefully that will get her to read with ease. She is learning really fast. I wont be able to spell in front of her soon. (lol)
Well that is all for now, but before I go, I want to Thank our family for all the love and support that they have given us this year. WIth out them... I do dread to think where we would be. We appreciate all you do. And also Thank You again to all the "Friends of Santa". You all really made our girls Christmas such a memorible one. Please see the pictures before you leave and if you want to post a comment.... please feel free.
Hope you all have a SAFE AND HAPPY NEW YEARS and we will see you NEXT YEAR!!!
Love,
Darin, Vicki, Hannah and Sarah!!!
