Thursday, October 22, 2015

Life is busy....

I cannot believe I have not posted since July!  Wow, does time fly!  Everyone is doing fantastic.  I had a minor setback in August, having to have my gallbladder removed and then having complications that put me down, in bed, for 28 days.  It was a miserable time for me, but my husband and daughter, Natalie, really stepped up and took care of things and me, when I was so sick.  Hooray for them, I am proud of them both.

Now on to kiddo updates.  Arielle is walking and running all over the place, she is a little toot toot.  She doe not verbalize much, but she is using her signs a lot more to communicate her needs.  We signed up for Gemiini and both girls watch it several times per day and love it.  She had a sleep study done and does not have sleep apnea or any other concerns in that area.  She is a pretty healthy little girl.  About her only real health issue is having eczema really bad and having to find ways to treat it and watch for certain foods that make it worse.  Arielle takes therapy twice per week, working with developmental things like attention and playing, and also still working on gross motor skills trying to teach her to step up small steps and get in and out of thresholds without crawling over them.

Arianna is doing fantastic.  While she was at the hospital having heart surgery we did a swallow study and found that her liquids needed to be thickened in order to help her learn how to swallow effectively.  We have been thickening her liquids and it has made a lot of difference in how she eats and swallows and she no longer has nasty gurgling inside her lungs because she is not swallowing liquids down her air pipe any more.  She still takes thyroid medicine, but the good news is after an ultra sound of the thyroid gland, they found it to be fully developed and healthy, so she may get off medicine down the road.  She has become a lot more mobile, she sits and scoots all over the place, which is exactly what the therapist does not want her to do, but unless you follow her all over the house and stand over her, you cannot prevent it.  However, she is actually putting her feet down when you try to stand her.  Before she curled them up to her body like an infant.  They measured her for leg braces which should be in this next week.  Once we get them, they have a special type walker she will strap to, stand and either try to walk of just stand there.  It has straps where she cannot sit down or fall down in any way. It will give her the opportunity to try and move her feet to get around.  We have a goal of having her weight bearing on her legs and pulling up to furniture and stuff, by the end of the year.  Our second goal is to have her walking by February when she turns three.  She will also start school for half a day when she turns three, so this is important to me.  I don't feel comfortable having her go to school not walking, especially since she is not a wheel chair candidate.  I cannot believe how smart Arianna is!  Cognitively she is right on her age, she totally understands when you speak to her, she will do what you ask.  She cannot really speak words, but she sure mumbles and rambles all sorts of things like she is talking.  Arianna has therapy four times per week.  She is working on feeding issues because she still packs food in her cheeks or the roof of her mouth.  She has physical therapy and speech language therapy along with developmental therapy with Arielle.

Natalie has started second grade and so far we are having a very nice year.  This is our second year to home school and we changed our curriculum up a bit this year, moved stuff around and things are working much better for both of us, it has been very nice.  She is a very smart young lady, who can read and spell on a much higher level and to me that is important.  If she can have an excellent literacy in reading and spelling, then everything else will be easier for her.  If a person struggles with reading and spelling, than life is harder in all other areas.  Natalie is part of the American Heritage Girls and loves it.  She has already earned so many badges and tries really hard to be kind and caring.  This year will be her first communion and confession and she is very excited, but also nervous.  She is scared about talking to Father Ken about her sins.  We talk a lot about what types of things are considered sins and the process of confession.  She already knows so much about it, but will really be ready by the time January gets here.  Natalie is taking Jazz and Ballet again this year, it is her 5th year and she is doing very well.  She wants to add gymnastics, but we will assess that later.  We are already too busy and not sure we could add it, but she does not want to give up dance to replace it.

Carissa is attending preschool as a four year old at the Montessori at our church.  We decided to continue the same process we did for Natalie, which was three years in the private school, then after completing Kindergarten, which is the third year, I will home school her as well.  I love how they learn so much about God and mass, the behaviors expected and not allowed in mass  Plus she loves doing all the things they do..  Carissa is taking ballet/tap for her second year, she likes going to dance like her big sister.

Both of the older girls loves playing with and attending to their little sisters.  Natalie has learned how to change diapers and has fun with it.  She can also dress the babies, like they are big baby dolls.  Carissa enjoys reading books to them, or telling them the story she thinks the book says!  Both babies are fascinated with the older girls, which really helps them with learning things and speaking.

Shawn and I went on a much needed vacation for our anniversary. We went to the Cayman Islands and snorkeled and went deep sea fishing, it was a blast.  My older daughter Brandi did a great job staying at our house and watching her little sisters.  We were very thankful she was able to take off work and spend a few days here.  Her little sisters lover her so much!

We had a fund raiser to attend for friends of ours whose baby boy is deaf.  They are trying to get cochlear implants for him.  But when we arrived we just so happen to get in line right behind Shawns parents and Uncle.  His Uncle turned around and was friendly as always, talked to the kids and met the babies.  Sad to say, his parents, the grandparents to our children, never said a word.  They turned and looked at our children, turned around and never said anything.  They have never met the babies, and as their actions have shown the past year, they have no intentions of ever meeting them.  They are the most hateful humans on this earth.  My sister in law, Shani who used to talk so badly about them, used to not have anything to do with them for years, never accepted presents from them for her children, now, defends them.  It is really sad, that she only wants a relationship with them because they are getting old and she wants to be a part of the Will when they die.  I am so thankful to have great friends who love and support us, a community who knows how his parents are and believes they are such angry hateful people, and tries to make up to our children for the short givings that come from their grandparents.  I am thankful and happy to have a husband who loves me and his children enough that no matter what his parents and family do and say, he will stand by us and he will follow the commands of the bible and leave his parents side for his family.  I am thankful that we don't need any member of his toxic family to make our family happy and to meet the needs of our children.  My mom and sisters provide that to them, as well as our good friends the Beckers and Hoffbauers who act as Aunts and Uncles.

On another note, I am taking another class this semester, so I am really very busy.  I attend observation of a classroom once per week and am loving the thought of teaching other children someday.

The Lord has blessed me so much this past year.  I cannot believe that He has allowed me, and us to be the parents to these wonderful precious children.  We will do right by Him and raise them in the way they should go, teaching them about His wonderful works and leading them to salvation.

Wednesday, July 1, 2015

Finally home!!!

Arianna's heart surgery was an amazing success!!!  The doctors are so amazed at the recovery and progress that Arianna has made.  We contribute all of it to God and thank all the prayer warriors who have been praying daily for our little princess.  God proved the doctors wrong on so many things.  We were told she would be in the hospital for 4-6 weeks, we were there 2.  We were told she would end up with a permanent pace maker, she has NONE.  The doctors even pre-wired her in surgery expecting to use the pace maker and her heart never once time showed any type of arythmia and this totally surprised the doctors.  She recovered and flew out of ICU very quickly.  She had a couple of days that were tense and hard, but overall her recovery was by far much quicker and easier than doctors had predicted.  We are home now and she is getting back to herself, except for not eating.  Not eating is the only issue we are trying to combat right now, but feel she will come around after being home and in familiar surroundings for a few days.

While we were in the hospital they ordered a swallow study and found that Arianna asperates when she swallows, but this is an easy fix with simply thick that is placed into milk and other liquid or thin foods and drinks.  Asperating can also be a contributor to upper respiratory illnesses, so that was an awesome find.

Again thank you to all of our prayer warriors and the wonderful ladies who have been bringing meals to my husband and kids while I was at the hospital.  Your help, thoughts and prayers are much appreciated.

Monday, June 1, 2015

Gearing up for summer!!!

Our very busy school year is coming to an end.  Carissa completed her 3 year old preschool at the Montessori at our church, and Natalie is almost done with the majority of her home school, with the exception of the summer materials we will continue.  I have been busy planning and reviewing new home school material for next year for Natalie and getting prepared for teaching at vacation bible school next week.  The majority of my stress was trying to find a sitter during the weeks that Arianna is in the hospital and God has answered my prayers.  I found a wonderful college graduate who is waiting for her new job to start in the fall at a school district.  She is old enough, mature enough, drives, knows CPR, is a life guard and swim instructor.  Wow!  I am so excited to have her come to our house daily and watch Natalie, Carissa and Arielle while I go to the hospital.  This was a huge stress relief for me in being prepared for the upcoming surgery.  Kids are very excited as well because them getting to swim was depending on the person hired, lucky them she fits the bill!!  We are getting our pool ready for summer swimming.  With all the rain we have had, the pool cover remains on the pool.  But this week we are expected to hit the 90s with no rain, so its time to swim!

Arielle is almost walking.  She holds onto things and walks, she pushes and walks behind toys, she even stands alone and takes a few steps so she should be off and walking very soon!!  Arianna, is doing her own cruising around the house, on her belly!  We will have her crawling soon, I hope.  It looks like it will be after surgery since that is coming up quickly.

Both little ones have doctor appointments at ENTs, Arielle for possible sleep apnea and Arianna for nose bleeds.  Lets pray these are quick and easy fixes for both!

Thursday, May 21, 2015

Arianna is such a trooper!!!

Yesterday Arianna had a procedure in the Heart Cath Lab.  They put her to sleep and inserted a catheter into her main artery and into the heart.  They were taking pressures of the interior of her heart to be better prepared for her surgery. When they were trying to put her to sleep they could not get her intubated cause the tube would not go down her trachea, they called in a pulmonary doctor who came and did a scope and found that her trachea did not develop normally and when you get below her vocal chords it narrows to a very tiny size.  He also found she has a second right lobe to her lung that is non functional and serves no purpose.  Anyways, they were able to get her to sleep in a different way and they performed the procedure with no issues.  However, the findings are exactly what they expected, but we did not expect to hear the news that she will be ICU for 4-5 weeks after her heart surgery.  Her little heart is enlarged so much they said her recovery will be tough and long. She is scheduled for June 16th, which gives us time to plan. We were not expecting such a long hospital stay and the hospital is over an hour away from our home.  Our plan is to find a sitter to come to our house daily and watch the other three kids, while I travel back and forth daily to the hospital and Shawn works.  I will probably stay one or two nights per week at the hospital and we hope for our whole family to stay the weekends down there so we don't have to travel.  It will be a long process for all of us, but we will get through it and Arianna will feel so much better afterwards.

Please continue to pray for little Arianna, she has gone through so many medical tests lately and now her upcoming surgery, but she is such a trooper.  Yesterday after her Cath lab procedure he had to lay for 4 hours flat on her back and she did such an amazing job!!  God brought this little princess here and into our lives for a reason and He will heal her and give her an amazing life.

Thank you all and God bless!

Monday, May 11, 2015

Mothers Day....

Mothers Day was beautiful and full of love and joy!!  Arianna was baptized, we celebrated both her baptism and Mothers Day with wonderful loving friends.  We are fortunate to have very special close christian friends who love us and nurture our marriage and relationship.  They are always there for us through thick and thin, ups and downs and they always remind us of Gods love for us and His intentions in our marriage covenant with Him.  How awesome is that to have such friends, we love you Michael and Billie Becker and Steve and Kim Hofbauer!!!

Arianna was so beautiful in her baptism dress and full of smiles as usual.  We are so blessed that God gave us the opportunity to bring her into our family so she could bless us with her immense love for others.  She is a true light of God!!

Tuesday, April 28, 2015

Arianna updates...

Today both babies had eye exams.  Arianna has astigmatism, but not enough to warrant glasses just yet, probably 3-4 years out.  Arielle has some nearsightedness, but not enough to warrant glasses, again probably 3-4 years out.

Open heart surgery has been scheduled for Arianna.  June 16th she will have both holes fixed and a new valve created.  She will be in the hospital for 10-12 days.  Please keep her in your prayers.

Arianna has changed so much since we got home on March 26th.  She is scooting all over the place now, whereas before she just laid still and cried because she did not like tummy time.  She is gaining so much strength in her upper body, she can also sit now unassisted without falling backwards at all anymore.

Arielle is just about ready to walk, she is pushing everything she can to walk, not much longer and she will be taking off on her own!!

Both girls are so amazing and loving and bring so much joy to our family!  Please keep Arianna in your prayers as we embark on her journey to good health.

Gob bless!

Thursday, April 23, 2015

Things are going great!!!

Our family is enjoying all the bonding, playing and fun we are having with Arianna.  She is changing every day.  When we first brought her home, she could sit alone but had to have a pillow behind her because her back muscles are so weak she could not stop herself from falling backwards.  As of today, she sits alone without a pillow and has not fallen backwards in a couple of weeks now.  This means her muscles are getting stronger just by being allowed to sit on the floor and use them to gain strength.  We also give her lots of tummy time, even though she is over the age of two, since she was never allowed to stimulate her body through exercise, she could not crawl or move anywhere.  Now she spends lots of time on her tummy, she can scoot herself backwards and turn her body around in circles in an attempt to get the toy she wants.  All I can say is progress!!!  She may not be crawling yet or doing the things she should be doing at her age, but she is making amazing progress.

The results of her blood tests and poop specimans are in.  She is positive for parasites, which we pretty much knew would be there and her thyroid is not working properly.  So now we have an appointment to see the Endocrinologist to get that straightened out. We are working on a short time schedule here, because all these things have to be addressed and under control either through medicine or some other way, before May 20th when she has her heart cath surgery to measure the pressures within her heart and lungs.

Arielle and Arianna are so much fun to watch.  Little Arianna will be playing with a toy and here comes her sister Arielle to take it away.  She has decided to fight back, so now they play a game of tug of war with Arianna looking Arielle right in the eyes and squealing at her to let go.  Arielle just stares at her and moves on.  Arielle is very mobile with crawling and pulling up to stand and starting to take steps of walking, while Arianna sits back and watches.  But Arianna is very verbal and picks up on signs very quickly.  She can sign, eat and more and she loves to read books.

So next week both babies have an appointment to have their eyes checked.  Another item on our list of checking those things that could possibly cause issues in a Down syndrome child.

Thank you for visiting and sharing our story!!