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.

Rainy Day's

Rain has a funny way of messing with our heads. Not only is it not convenient when you have places to go but it's dismal and has a sedating affect.  Today was a really rainy day so I just assumed it would be a day full of gloom and sadness. 

We started out the morning by visiting one of our favorite Pediatrician's, Dr. Kaloji. She confirmed that Reese did in fact have a severe case of Coxsackie Virus or better known as Hand/Foot/Mouth disease. I will spare you from pictures but lets just say it isn't pretty. Thankfully, I believe it bothers me more than it does Reese. Other than being a little fussy, loss of appetite, and extra sleepy, she hasn't been affected too much by this virus. Now, we just have to let it run it's course and hopefully we will see some improvement in the new few days. 

So, after calling my OB's office to let them know about Reese's virus, they had me come in to get some blood work done to see specifically what I have been exposed to. During that quick lab visit, I missed a very important call. A call I've been waiting to get since the day I had my blood drawn last. The geneticist from Maternal Fetal Medicine was calling to give us our results. 

Of course, it's still pouring down the rain, but thankfully for blue tooth I didn't have to use my hands to call her back. She started the conversation by saying, "I've got good news for you." (in my mind,  "Thank you sweet Jesus!") The tests came back negative. They show a normal blood count, chromosome count and you have a 99% chance that you will not have a baby with Trisomy 21, 99% chance that the baby will not have Trisomy 18, and a 92% chance that the baby will not have Trisomy 13." 

I know in my heart that this baby is healthy but to be able to hear it confirmed by this cutting edge, technically advanced test was A-M-A-Z-I-N-G! I just can't thank God enough for hearing our prayers, your prayers, every one's prayers. There is such power in prayer and claiming certain things in Jesus name.   Although we would have been fine with whatever the results, we have a desire to experience what most people experience and that is a 100% healthy child. We feel like we have so much to learn and do for both our girls that it would be nice to have a child that won't have those same needs. Each child, no matter what, will face their challenges, their struggles, will have strengths and weaknesses- I understand that. However, I just don't know if we could emotionally handle one more surprise, one more diagnosis, or one more close call. That is me being completely honest and real. 

People say to me all the time you are an amazing mom or they say I'm not sure I could do what you do. Well there are certainly days where I don't feel like an amazing mom or I question whether or not I can handle the responsibilities given to me. I certainly have my rainy days where gloom and sadness suffocate me. Where I feel sorry for my situation and wonder why God chose me to raise two special needs children. Then I think back to the days where I would be alone in prayer and just beg the Lord to let me one day be a parent.  To feel the unconditional love of a child and love them unconditionally in return. Then the clouds start to disappear and I see the sun peaking through. I know I'm not alone and because I alone could not be the type of parent I need to be. It's only by God's grace and His strength that I'm able to get by, one day at a time , one challenge at a time. Parenthood is serious business, it has it's ups and downs but we all do the best with what we have and pray that God fills in the gaps and picks up the dropped pieces and puts them back.  Knowing that allows me to face these rainy days because he always offers a glimpse of sunshine in the midst of it. 

Thank you Lord for my glimpse of sunshine today...Praise you for hearing our prayers and our hearts desire. We pray for continued health and development for little "buddy" and are looking forward to the day he/she joins our imperfect but loving family! Amen

The Virus

I feel like half of my blogs are about illnesses or plague's that have hit our household these. I guess we are just walking through a season right now. But let me tell you, I'm ready for a new season.

This weekend Reese had a low-grade fever. It broke after 24 hours and we thought all was good.

Until.......around 4:00 pm yesterday (yes it happened that quick) she broke out with a rash all over her body. It started on her legs and slowly spread to her arms, diaper area, back, and chest. I spoke with my sister, who's daughter had the same thing going on just a few days earlier and said she was feeling and looking much better after 24 hours. So instead of worrying. I gave her some benydryl and put her to bed.

This morning the rash had gotten better in some places but started to manifest on her hands and feet. I called the Pediatrician and spoke with a nurse who assured me, after hearing her symptoms, that it is just a virus and there is nothing they can do to treat it. We just have to ride it out.

I wasn't too concerned at this point because Reese was her cheerful self, however, she wasn't interested in eating and from time to time would burst out in tears for no apparent reason. My mom, bless her heart, who helps me daily with the girls so that I can work from home, was unable to soothe her. Finally after two attempts, I was able to get her down for an early nap.

Now Reese has never been a great napper. Grace, she use to nap 3-4 hours at a time when she was younger. But we are lucky if we can get Reese to stay down for 1.5 hours. Well today, Reese slept for 3.5 hours. Another indication her little body was fighting this virus.

When I returned home, from getting my hair done, Reese was awake and happy but my mom informed me that she was extra clingy but was able to eat some hummus and crackers. When I inspected her body again, the rash had spread and was worse in some areas.  I again, called the nurse and this time they were able to give me some things to look for, although they still thought it was a virus. She instructed me to contact them again if she got another fever, or her skin began to peel, or blister to contact them. She told me I could soak her in a cool bath of baking soda but avoid soap as it is an irritant. She also told me I could use Hydrocortizone Cream 1% as a topical.

Then I asked the question about the type of virus that is not safe for pregnant woman to be around. She told me that was called the "fifth virus".  The unborn baby can contract this and it can cause complications! GREAT!  She said one of the symptoms of that virus is bright red checks (which Reese doesn't have) but to be safe I should call my OB. Apparently there are some blood tests they can run to see if I've been exposed or to see if I have enough antibodies to fight the virus.  However, she didn't want to alarm me and didn't think this was the same virus.

Then about 15 minutes later the nurse called me back to say she thought I should call the pediatrician tomorrow and insist the see Reese, explaining that I'm pregnant and we just want to make sure it is what they think it is. She also told me to call my OB and see if they want me to come in. Okay..now I'm alarmed!

So tomorrow I will most likely be in two different doctor's offices trying to figure out where this strange rash came from and which Virus it is related too.

To be continued.....