October Happenings....

I admit that I have been a slacking blogger. However, I am going to blame most of it on the busy schedule we have and more so on the laziness of this mommy in her third trimester!!! It's already mid October and we have had so many wonderful things going on that I just had to share them with you.

Oct. 2nd...this is me at 35 weeks. 

I can't believe how fast this pregnancy has gone. New symptoms this month are heartburn, swollen ankles (still not as bad as with Grace) and extreme carpal tunnel. I have never in my life experienced a numbness and burning in my fingers and hand. It is extremely painful and has kept me a lot of nights in tears. Unfortunately there isn't much I can do. I do wear a wrist band at night and have recently elevated it and that helps some but it is still nothing I would wish on anyone else. The nurse told me pretty much the cure is delivery. Thank GOD I have three week or less (as of tomorrow).

Oct. 6, 2012...Step Up For Down Syndrome Walk

This was our 2nd annual participation in this awareness walk as Team Reese's Pieces. We had a great turn out of friends and family. We also had many online donations from various friends across the country. We are so blessed and honored to be part of such an amazing association that advocates for and loves our Reese and individuals with Down Syndrome. 

Here is our team..next year we hope to double the participation. Good looking bunch of folks, don't ya think? 

There was fun to be had by all. All the kids enjoyed the face painting, jump houses, and pizza. 

Oct. 7, 2012...Our family style baby shower. We had so much fun. Thanks to everyone who came out to celebrate the anticipated arrival of our third little princess!

Seeing Clearly

Look what Reese got!!!

During a recent follow up with the wonderful Dr. Lall-trail, we discovered that Reese had developed a stigmatism in both of her eyes. Me, not having any knowledge of what that meant (no one in my family wears glasses) asked the Dr, is that something she will out grow (thinking that it's no big deal)? He said, possibly, but in the mean time she will need glasses. I was shocked and said,  "Excuse me? Like glasses she will have to wear daily?"  I'm not sure why I took the news so hard. It's not the end of the world and we know some pretty darn cute kids that wear glasses at a young age. I think I just wasn't prepared and felt like this was yet another new challenge that we would need to face. I just know my girl and how stubborn she can be. I mean, how to you keep glasses on a 3 year old???? The dr's response, "Once she realizes she can see better she will prefer them." I just looked at him and said, "Okay, we'll try it out but I'm not sure this glasses thing is going to work!" 

We are trying to get use to them and she isn't always thrilled to be wearing them, but I think in time, she will appreciate that she is able to see things more clearly. Thankfully they make rubber frames for little hands that like to destroy everything. We also got to pick out a color. We went for a peach/nude color to blend with her hair and skin color. I think she looks adorable. 

I find when I'm able to distract her with her favorite TV show or an activity, she will wear them for a while. However, as soon as I turn my back, they are off and flung across the room quickly. I hope her teacher at school is having more luck than me. 

I would LOVE some advice from other parents on ways in which you were able to get your children to wear their glasses. This is all new to me. I had to have them give me detailed instructions on how to clean the lenses properly. I feel lost in this area. 

1...2...3!

I can't believe as I'm typing this right now that my baby (yes we still call her this) is going to be 3 years old tomorrow. She came into this world unexpectedly and has changed us in so many ways, they are too great to list. We are so proud of her and all her accomplishments.

She is our sunshine amidst chaos...she is our joy...she is funny...she is determined....she is feisty....she keeps us on our toes...she is love in it's purest form...she is fearless...she is beautiful...she will change this world for the better...she is a dancer...she is a lover of music...she is a little sister....she is a big sister...she is strong (no kidding her upper body strength is insane)...she is a student...she is our pride and joy....she is PERFECT! 

Happy 3rd Birthday Reese Taylor. We are so blessed that God chose us to be your parents. We are so excited to watch you grow up and live out your dreams. You can do ANYTHING and we will be here to support you every step of the way!

xoxoxoxo, Mommy & Daddy & Gracie

Changes...

Most people fall in to two categories when it comes to change. Either they thrive on it and anticipate it with excitement or they dread it and avoid change at all cost. Which category do you fall in???

I use to think I was the one that thrived on change. I would pick up and go and change my schedule at the drop of a hat. I love to move and change states and welcomed change whether it be work, meeting new people, finding a church, etc.  However, lately change seems a bit overwhelming.  Maybe cause I'm not a young 21 year old seeking adventure and the unknown but a 34 year old mother of two very busy little girls and 6 months pregnant with another.

We have A LOT of change coming in the next few months. Some of which I'm anticipating with excitement and others I'm overwhelmed and dreading.

Let's start with the Exciting changes: 

1.  In a little over three months we will be welcoming our third daughter. I get so excited to think about adding to our little family and wondering if she will favor one of her sisters or look completely different. I wonder what her personality will be like and what her talents will be. This is a very HAPPY change and one that I know will impact our family in many positive ways!

2.  We are moving Sept. 1st! We absolutely love this neighborhood and are excited to start as a family of 5 in this house. I'm excited to purge and get rid of a lot of junk. We are even having our very first family Yard Sale.  I'm excited to decorate and get the girls both in their new big girl beds. I'm excited to set up the nursery and I'm excited because I will finally have a laundry room!!

3.  Grace is returning to Atlantic Shores Christian School. She thrived last year in K-3 and I know will do wonderful things this year in K-4.

4.  After three years of attending the same church and finding out that we were parting ways, we have found an AMAZING church (after searching for a few months) that we absolutely love and are excited about. God is moving mightily in the church and in our personal lives and I'm excited to see all the change that will take place in the near future.

Okay...so the not so exciting changes:

1.  We are moving! hahaha. I know that I listed this in exciting but all the work that will need to be done up until Sept. 1st is overwhelming and daunting when you are 6 months pregnant with two busy toddlers.  Three years and two kids in one house = a lot of stuff. Hoping to get rid of most of it and that makes it a little bit easier to deal with.

2.  Reese is going to school. While I am excited that she will be learning and interacting with her peers on a daily basis, a part of me is not ready to send her out in to the world without mommy or daddy by her side. I'm also dreading the IEP (which will be happening in the next 30-60 days) because of the horror stories I've heard from other parents. We just have to pray and trust that the Lord will help us when developing and approving her IEP. Any suggestions you other parents have for me, I would love to hear them. I have learned some great tips already and plan on utilizing them.

3.  Matt has been working a ton of hours. Running your own business requires that and I understand this however, lately it's really taken a toll on me and the girls. I miss my husband and the girls miss their daddy. The change in our nightly routine without him has not been easy. However, I know this change is temporary and once things slow down and he is able to schedule out his work better, we will get back to normal. I don't know how single mother's do it and I have a lot of respect for them after the past month that I've "felt" like one.

So whether you welcome change or avoid it like the plague, it's a part of life and it's how we grow and learn.  I do find comfort knowing that no matter what the change, God is there to hold my hand through it, that I have a supportive husband, family and friends that are embracing these changes with me. :)

Ace Bandage

We've recently incorporated an Ace bandage into our therapy for Grace. The technical term is called Modified Constraint Induced Therapy. Basically we wrap her dominant hand (lefty) with an ace wrap so that she is forced to use Righty. Then on righty we wrap the last three fingers so that she is forced to use a pincer grasp (which is important for buttoning or manipulating smaller objects.) She currently uses the Palmer grasp (her palm) to pick up most things with her right hand.

Today during OT I watched as Grace patiently picked up several puzzle pieces using her pincer grasp (her therapist draws a smiley face on her thumb and pointer finger and tells Grace that they have to kiss:).  I also learned about a three buck chuck. It's basically when you use your pointer and your middle finger and thumb to grasp larger, heavier objects. Overall, Grace did very well and didn't get frustrated. I love to see the look of determination and concentration on Grace's face while she is trying ever so hard to use Mr. Righty.

So our homework for the next week is to try to use the MCIT at least 30 minutes 2 x day during play and see how well she tolerates it.  We also have tried and do kineseo taping but she usually takes that off within the first hour.

We also found out that starting in August we are going to take a slight break from OT. We are at a place now where we know the fundamentals of what we need to work on. As she gets older, she will have a better understanding of the importance of using Mr. Righty and better problem solving skills of how to use it.  She will never have "normal" use of that hand but with practise, she teach Mr. Righty how to assist and be helpful in every day life, something you and I don't even have to think about.

Overall we have come a LONG way since we first started OT. It took several months for her to realize she even had a right hand. Now she proudly announces to me at various times in the day, "Look mom..I'm using Righty!"

Daddy's Girls!

God not only blessed me with an amazing husband but an incredible father to our girls. They are the apple of his eye and my heart melts to watch him with them. 

Here is one of my favorite pics. Grace was either sick or having trouble sleeping so Matt climbed into her crib and lay with her until she fell asleep. 

Here is a recent picture of Matt with Reese where you can just see him beaming with pride and love.

10 Things (and there are many, many more) that make Matt a wonderful father.......

10.  He works long, hard hours to provide for his family. 

9.  Every night he bathes and reads books to one if not both of the girls.

8.  He paints their fingernails and toenails.

7.  He regularly conducts daddy/daughter dance parties in our living room and acts just as silly and crazy as a toddler.  

6.  He sings "Somewhere Over the Rainbow" over and over again for Grace when she asks.

5.  If mommy is at the end of her patience, he can tell and steps right in and takes over so that mommy can escape for a few minutes to regain my composure. 

4.  He is the one that can't say no when the girls want to sleep with us. He is also the one they want to snuggle with. 

3. He changes diapers and when the girls were babies would get up with them when he could so that I could sleep.

2.  He tells them everyday how beautiful and special they are to him. 

1.  He loves them unconditionally and never holds back his emotions when it comes to expressing that love to them. 

You could say I'm pretty excited to be adding another Daddy's girl to the family in just four months. I know she will hold a special place in his heart, just like his other two princesses.  And I know he will be her Prince.  As Grace tells him... "You are my prince Daddy and we love each other!" 

Pink Sparkly Shoes!

I'll never forget when we first found out that Grace would need orthotics. What is an AFO and SMO??? Is this something she would need to wear forever? Can she still wear cute shoes? Will they bother her? We had so many questions about a very small brace. The thought of it overwhelmed me and gave me anxiety. Thank goodness that has never been the case for Grace.

She was fitted for her first one before she was even able to walk. I remember the expert at the splint clinic had an especially hard time fitting Grace cause the back of her heel (the part that needs to stay down in order for the brace to do it's job) was narrow while the rest of her foot was wide. We finally were able to find an AFO (Ankle-Foot Orhosis) that seemed to work and in time it became a part of our normal dressing routine. However, I will admit to breaking out into a sweat (mostly psychological) most times that I would have to put it on her. I can gladly say now that after three years, and several different AFO's, I no longer break out into a sweat or am bothered as much.

Grace has never questioned why she has to wear it or complained about it, until recently. She is a little girl and a very "girly-girl." She is very much into Princesses and Barbies and dressing up. She often wants to go to "Pairs" (better known as Payless) to get sparkly, pink shoes.  We oblige and let her wear them to church or special occasions but for the most part we keep her in her AFO to keep her range at a good place.

Just recently she has complained about it hurting. She has quickly outgrown this AFO (usually between 4-6 months she gets fitted for new ones) so we have been out of our AFO for a few weeks now. We can tell a BIG difference too. Just confirms to us that the AFO is the best thing for her. She is now lifting her heel and walking on her toes (right side) and when we do our daily stretches we can tell how tight her muscles have gotten.

Today we were thankfully squeezed into a cancellation at the splint clinic. She was casted and fitted for her new AFO and I let her pick out the colors (purple and hearts). She gets very excited to get new AFO's but that is mostly cause she gets to go shoe shopping!

My sweet girl

She sits completely still and doesn't complain when they cast her and cut it off her leg. She just sits and watches, fascianate by the whole experience. She has really come a long way! 

She got excited because she thought we were getting to bring the cast home with us. We explained that we have to send it off so that they can make her new brace (purple with hearts)! 

Now that she has downgraded from an SMO to a chipmunk (funny name I know) on her left side, she requires two different size shoes. This can get costly but thankfully Nordstrom allows you to purchase one pair of shoes in different sizes. We haven't gone there yet but will for sure after we get this new AFO in a few weeks. Before now, New Balance were our shoe of choice because they are one of the only places you can order xwide.  So if you have a child in AFO's and are having a hard time finding a shoe that fits, go to newbalance.com or try to find an outlet. You can get some great shoes that work great with these types of braces.

Monday we are scheduled for Botox. I'm sure I've blogged on this subject before but it is never a pleasant experience. The versed (amnesiac sedative) doesn't work on her. She knows as soon as we enter the Children's hospital that she is getting shots. I HATE it but it is the only thing keeping her, thus far, from having to have surgery. For that I can endure a few minutes of watching helplessly as my child screams out in agony.  Matt wants to punch the Dr out every time. But it passes quickly and the effects last 4-6 months.  You won't see any happy pictures of Grace on these days.

Overall, we are still learning and walking through this journey of raising a child with CP but we are very thankful to have a child that is strong and preservers. She inspires us and when I want to complain about something small in my life, I just look at her and have to re-evaluate. She is only 4 years old and has had a stroke, thousands of hours of therapies, and sacrificed the pink, sparkly shoes for her bulky, hot, AFO.  She is amazing and I am honored to be her mother!

Guess What??????????

We are very excited to announce that..........

We kind of already knew about three weeks ago but wanted to wait till our big ultrasound today to announce it. We were (me especially) shocked at first because this pregnancy felt so different, but we LOVE our girls and are excited to add another precious girl to our family!

Here she is sucking her fingers!! Isn't she adorable! I can't wait to meet her!

The best news of all is that she looks great. She is measuring in the 59% percentile and everything looks normal.... heart, kidneys, neck fold, legs, arms, etc. We are praising God for a healthy baby!!

Excitement

Do you ever have a wave of excitement or joy overcome you for no reason? You aren't necessarily anticipating anything special but you just feel blessed?

I treasure those moments because life can be hectic and stressful. We rush around (especially as parents) from one thing to another and rarely have any time to ourselves. (Hence, why I've been slacking so much with this blog.)

But then......you just take a deep breathe and you realize how good God is and how thankful you are for your family, your health, your friends, your job, and for your life in general? I think this is God's way of carrying us through and reminding us that no matter what He is here and wants the best for us.

This verse reminds us of his promise to us in Jeremiah 29:11

"For I know the plans I have for you", declared the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

How encouraging, especially when life doesn't go the way we had hoped or planned. It's all a part of God's master plan. If that doesn't excite you my friend I am not sure what will. I'm excited about my future cause I know God has orchestrated it. Are you excited about your future?

Time Out!!

So we've been having some "hitting" and "scratching" issues with Reese lately. She and her sister will get into it from time to time but she usually would leave other kids alone....till recently. Her behavior and lashing out is getting out of control.

This past Sunday we went to get her out of the church nursery and were told that she hit one kid and scratched another pretty badly. When asked what we were doing to correct this, we had to ask ourselves really what are we doing? In the past we just tell her no or attempt time out but neither seem to work. I will admit, she is still my baby so I tend to be more lenient. However, I know that is a mistake and I need to be more consistent and firm in my discipline with her. Can't give her special treatment just because she has Down Syndrome. That is not doing either of us a favor.

So, after discussing it further with her Speech therapist, she concluded what I already suspected. Reese is most likely frustrated because she is not as verbal as other kids her age and unable to communicate a lot her wants and needs. She can't ask for a toy back when a kid takes it from her. She may think that walking up to a kid and hitting them will get their attention to play with her. So we are working on teaching her simple words to express her wants. For instance, if Grace is in her space or trying to get her to do something she doesn't want we want her to say something like "don't want" or "leave me".  If she wants something we want her to sign want or say want. Right now she just points and points and gets frustrated when we can't figure out what it is. She is getting very good at repeating words and her vocabulary is growing but we still have a long way to go.

Then the issue of sensory awareness or sensitivity came up. We are going to have an OT evaluate her to see if there is anything we can do to see if that is an area that needs attention. From what I understand that could consist of brushing (using a soft brush to rub on her arms, legs, feet, etc) before going into public places, massage therapy, etc. I'm really not sure about too many of the details but am anxious to see if any of that helps.

Overall, most of her behavior is consistent with a typical 2 year old behavior and like any 2 year old they need to learn what is acceptable behavior and what isn't. It's our job as parents (even when we feel like we don't have a clue what to do) to give them those boundaries and be consistent.

Time out is now taking place in her room, with the door shut, for a total of 2 minutes. She needs to be removed from people and the situation and be alone for it to be affective. Then she must apologize (she signs sorry) to whomever she has hurt. This mostly is  her sister. We just need to get a hold on this and correct it, especially before baby #3 arrives in Nov. I want my sweet Reese to be sweet to everyone but she is human and goes through her emotions just like anyone else. I just want her to be able to do it in a non-violent way.

Anyone go through a similar scenario and what did you find was helpful for you? I am open to trying different things till we find something that works for her.

School's Out!

I can't believe it's already June. Seriously? What has happened to the last few months? I guess having kids does make life go by much faster. That's why we have to take time to cherish every moment and celebrate every milestone.

This year Grace attended her first full year of school. She was in K-3 at Atlantic Shores Christian School and we could not have anticipated how much it would positively impact so many areas in her life.  She absolutely loved it and did such an amazing job.  She made lots of new friends and learned all her numbers and letters. She learned more Spanish, phonics, how to spell her name and recognize colors, shapes, and numbers. She excelled socially, but we knew that she wouldn't lack in that area. She learned about Daniel and the Lion's Den and Noah and the Ark and Chapel was one of her favorites. She amazed her teachers with her drive and determination and inspired everyone that she came across. She is such an amazing little girl and it's been such a blessing to watch her grow and develop into the little girl we knew she could be.

This past week she had her first Field Day. For those that aren't familiar with it, it's basically a day filled with fun. The kids started the morning off with the pledge of allegiance to the flag, to the christian flag, and to the bible. Then they said a prayer and listened to a story told by Mrs. Hutchins. Then they sang some songs and reviewed their bible story.

They even had time to do the Hokie Pokie.

Then off to chapel for the opening ceremony. Here the kids sang and danced and prayed. Then the kids broke up into to teams with their team coaches (volunteer parents) and off they went. I was able to to be a part of the first hour and a half and our first station was bubbles!! The kids loved this station as you can imagine.

Then we were off to the soccer ball/dribbling station. A year ago, I would not have thought this Grace would be able to do this activity but she proved me wrong and jumped right in. She even kicked with Mr. Rigthy! I couldn't be more proud of something that so many parents wouldn't even notice. My girl can do anything she puts her mind to.

Grace and her buddy Brooklyn!

Next was bowling. Grace really enjoyed this one. Especially setting up the pins whenever she knocked them down!

Then we were off to the ball tossing game. Grace has a great left overhand throw btw.

Here is where I had to leave her but I know that the Popsicle station was next and would be much anticipated as the temperature was rising. Overall, it was the perfect day for Field Day.

Grace technically has four more days of school left but they are filled with parties, water games, and end of the year surprises. We are so excited for her to return next year for 4-K and are praying that she is blessed with amazing teachers like Mrs. Hutchins and Mrs. Abdow. We can't thank you enough for all you do for these kids, especially for Grace. We will never forget you and we know Grace will never forget you either.