Highlight of Fall

Pumpkin Patch

Running in the Hay Maze

Hay ride

Life would be boring without her

Gracie is truly a character in her own world that we all just happen to live in. This is her eating breakfast while demanding that she must wear her sun glasses to get through our morning breakfast. If you look at the window behind her you can tell it is pitch dark outside. She walks to her own beat and we wouldn't have it any other way!

Picture like these just melt my heart!!

Oh whatever!!

Yesterday Lexie and I made our way to the Developmental Clinic for a fun filled morning of doctors and therapist. Now this clinic is like one big appointment with a physical therapist, speech therapist, neonatologist, and a social worker. It normally last about 2 1/2 hours and the last time we saw these people was about 4 months ago. I understand that they do this clinic to save me time and worry about having to go to additional appointments on top of the ones we already go to. However, any mother knows that no kid can go through this long of an appointment without getting fussy. So the first specialist we see is the physical therapist and I was happy that we got her first because I wanted Lexie at her prime time that way she could demonstrate her best stuff. Well, I do have to say Lexie was showing off because she was pulling tricks out of her ' I didn't even know she could do' bag. She even started to army crawl on the exam table. I was amazed and know for sure she could totally crawl if she had more muscle tone in her arms. The therapist was very happy with Lexie's progress and gave me a few pointers on helping her use her hands to work on sitting and pushing herself forward on the carpet. Needless to say, Lexie wore herself out after that visit. Unfortunately, the neonatal doctor was next and it is he who rates her on what she can do and then through some inflexible guidelines he gives us the approximate age of developmental maturity. Well, Lexie wasn't having it. She didn't want to play with his therapy toys, be held by him..nothing! She was exhausted and was ready for her nap. He kept pushing her so I just finally told him that I could tell him what she is able to do and he could rate her that way. He gave me the most skeptical look like I was going to lie to him. I understand I may be her parent but I out of anyone is more concerned about where she stands too. I told him that and a few other things and he ended up just asking me instead. After his "examination" he rated her 4 months. I was like WHAT? WHY?. I know she is not anywhere near 9 months but I am sure 6 months is more like it. HE said that since she is not reaching for items above her head, she is only rolling from back to stomach, and not sitting completely by herself he felt 4 months was the accurate age. I told him that I didn't agree with him and really who cares what he thinks??? I live with her. Maybe I can teach Lexie to save her next diaper blowout till the next time we see him and only when he is holding her. Thankfully, I happen to know the social worker so she was like "Ugh, your fine." I guess they just want to make sure I am not losing it. I was actually looking forward to visiting with the speech therapist because lately Lexie has been having some trouble eating. She will take a bottle like a champ and will eat half of her meal but then halfway though it seems like she just forgets to open her mouth and push the food back with her tongue. So, we should be getting a visit from another speech therapist who can watch me feed her and give me any tips on what may help her. Thankfully, the speech therapist rated her at her corrected age which is 7 months so we at least ended the longest appointment of our lives on a good note! Overall though it was a big -Whatever!

FAMILY VACATION

Before I bombard you with pictures, let me tell you how our weekend went. This weekend we meet up with my family for one big family vacation. We were treated to a wonderful vacation at Great Wolf Lodge, rode the Grapevine vintage railroad to the Stockades and even got in a visit with some really good friends of ours. It was a really busy four days but we came home with one exhausted family so I guess that means the kids had fun. I have a feeling this may be the last vacation of this magnitude for awhile so it was nice to enjoy seeing all the little ones together.

Thanks Mom and Dad...we appreciated it!!

One BIG family picture!!

Our family

Enjoying the kiddie pool

On the train

Isn't she cute!!

Now that is sibling LOVE!!

Gracie with Cousin Donivon

All the other cousins

This balloon guy was really sweet.
He even made sure that we didn't leave Lexie out of the picture.

Ice cream time

The wizard game at Great Wolf Lodge
(money pit in my opinion)

I stumbled upon Ethan and Gracie playing Air Hockey.
Even though they had their cousins around, they still enjoy playing together.

We meet up with the Bolin family and this is the best snapshot we could get.

Inspiration

I love hearing stories that defy the odds. Especially the video of Michelle Mack who was born with half a brain. It is a must see! http://campbellbrown.blogs.cnn.com/category/brain-that-heals-itself/

9 month Check-up

This past week we had two doctor visits. One with her Neurologist and one with the Ophthalmologist. Her Ophthalmologist is still very happy with Lexie's eyesight and is actually surprised by it. She explained, "I know this sounds bad but every time I look at Lexie I am expecting the worse. Like some kind of damage but it just looks great." So we were thrilled after that doctor visit despite the three hour wait!

Next was the Neurologist, Dr. Faux. From the very beginning Dr. Faux has been wonderful. He will tell it like it is but just has such a carefree; seen it all before kind of attitude. He has never been negative and I have enjoyed having him as her doctor. That day he did not disappoint. His EXACT words were, "I am just amazed by how well Lexie is doing." He said that with the amount of damage in her brain he had predicted that she would have been scissoring by now. Scissoring is when the arms and legs go stiff and kind of go inward. I replied with, "I owe it all to the Stem Cell Infusion." I know he will probably never 100% agree with me but he can't disagree with me either. Thankfully, Lexie's arms and legs are not stiff at all. We seem to be on the other side where there is low muscle tone. She will not put any weight on her arms. She's almost gotten independent sitting down but will not use her hands to tripod herself. She will just keep falling forward. She does have more tone in her legs but will only stand for a couple of seconds then just collapse into your arms. These things are currently on the therapy list that we do everyday.

Here are some picture of Lexie during bath time. I forgot to mention she weighed in at 18.5 lbs!!
Hard to believe that she was a preemie!

Lovers of Pizza!

I should say that our family really LOVES pizza! I mean, we could eat it all the time. Eric always makes me laugh when he references us to being like the Teenage Mutant Ninja Turtles because when it comes to pizza, our family will eat it like it is going out of style. You can totally tell what decade we grew up in. Anyways, the one thing that I love is when we eat pizza I never have to say over and over again as I seldom do around dinner time, "Sit down and eat your food!!!". I forgot to get pictures of what our creations looked like after they were cooked because we had friends over but everyone ate it so that is always a good sign.

Reflections

One year ago today was the day that we found out our youngest daughter had hydrocephalus. I hope to not always remember the date but unfortunately that day's events will be etched my mind forever. Eric and I bounced all the way to the radiology department in Wilford Hall to found out whether we would be having a boy or girl. 20 minutes later I would quietly beg to go back to that happy; blissful moment. Where I thought as long as Eric and I were good people, great things would happen to us. I remember laying on the table when the technician told us that we were having a girl. We started to laugh and immediately started talking about Ethan and how disappointed he was going to be that we weren't having a boy. It was then that the technician excused himself. I distinctly remember Eric asking "Is it normal for him to go get the doctor?" It was at that moment that I knew. I knew that our lives were going to change but I only reassured my husband with, "Yeah, I am sure everything is fine". It wasn't fine. Two doctors and the technician explained that our daughter had hydrocephalus and her brain was being compressed due to all of the pressure. I really can't remember anything else that was said after that. What I can remember is that the doctor had really blue eyes and I just kept looking at him like he was lying to me. He had to be lying to me. This wasn't how it was supposed to be for us. I could feel his uncomfortableness as I started to cry but I couldn't stop staring at him. I needed to know that I wasn't in some horrible dream. I was in such a shock that even when he left, I who never stops talking, couldn't even mutter a word. We were asked to wait in the waiting room until an appointment with the OB/GYN could be made. I remember thinking how cruel they were. We had to go out into the waiting room where other pregnant parents waited impatiently to find out the sex of their child and not learning the most dreadful news they ever heard. I have never wanted to trade places with someone else more in my life than at that moment. Of course, I was still crying and having to even sit in the same room as them made me want to hurl. I wanted to scream that we were cheated and it just wasn't fair! After what felt like a lifetime in the waiting room, the technician returned to inform us that we needed to make our way upstairs to the 5th floor where Dr Faucett, the High Risk OB, was waiting for us. When Dr. Faucett appeared in our room, I remembered that this was not the first time I had met him. I met him at the parent orientation that every pregnant woman must attend when delivering at Wilford Hall. I had tried to get out of it by telling the nurse, "I have had two kiddos already, I know what happens". However, she didn't relent and I attended the class. At this orientation he discussed the future care of our pregnancy, nutrition and spent an unusually large amount of time going over genetic issues that may cause problems in utero. I grudgingly sat through it and have no problem saying that I thought the classic thought 'it won't happen to me'. Well back to our second meeting, you could say I felt he jinxed me. If I wasn't forced to go to his class, I wouldn't be one of his statistics. I didn't want to know him. Unfortunately for me, Dr. Faucett is one of the nicest men I have ever met. As soon as I was placed on the table, he grabbed my hand and asked me what we had been told. I immediately started out with "The people downstairs said our baby has hydro....." I couldn't even finish the word. More tears started to roll and I immediately looked at Eric who jumped right in and rescued me. He explained everything to Dr. Faucett and we started another ultrasound. There has never been a word that could bring me to tears like the word hydrocephalus. Even months later, it would take everything I had to not start crying as soon as the word would spill out of my mouth. Lexie hated the ultrasound machine and made it known that time and many times afterward that she was not going to sit by and have them examine her. She was a belly fighter! Although it was at that examination that we were told more details about Lexie's conditions and what possible outcomes we could expect. Throughout this entire meeting he seemed so positive. Somehow by the end of the meeting, I felt a little better. It sounds odd for me to even write that I had that feeling but he has that kind of energy where positivity beams and I have later found out is quite rare for doctors. It is not like he sugar coated it at all but he didn't act like it was the worst thing in the world either. As we started to leave I remember him saying, "I will say this and only say this once, some people choose termination". It was at that exact moment that I realized the severity of our situation. From all of the discussions that day it never once popped into my head that people would choose that option. My first thought was "Ughh I am not some 15 year old that got knocked up and couldn't handle it." I was an adult, was sure of myself and all of my decisions. However, just that little sentence would soon cause so much chaos in my thoughts that I still feel will follow me past my judgment day. I am of course, my worst critic and that guilt will never ever cease.

I love Lexie as well as my other children with all of my heart. I can't imagine my life nor would I want to without them. However, that day all I could feel was "God,why me?" I wanted our lives to go back to how they were. Where I was trying to the best mommy to Ethan and Gracie. I remember I kept saying "I was their mommy first and now all of my time, energy and worry will have to go to just one child". It wasn't fair to us, to Ethan and Gracie, and especially to her. She was robbed and nothing could be done to fix that. When we left his office, Eric and I literally had to put our happy faces on. We had family visiting us and we were throwing a party. It was such a happy time that we didn't want to ruin our families happiness and to be frank we just weren't ready to talk about it yet. We needed to soak it in before we told anyone. I remember I couldn't fall asleep that night. The tears just wouldn't stop. I woke up sometime during the night and helplessly tried convincing myself that it was a horrible dream. But, like all things reality set in once again. I remember Eric reaching for me and we just held each other. It was horrible to watch each other suffer during this time but there was a sense of comfort knowing that I wasn't alone. It was by far, the longest night of my life. When I look back at that day and all of the days following, I punish myself for what I have thought and felt. I see it all different now and know it will continue to be that way. Every time, I look at her, I just can't get enough of her. I think how we are so lucky to have her and I don't want to ever take it for granted again. Because of that I sometimes fear that God will take her from me as a way to punish me for not embracing her from the beginning. I know it doesn't work like that but the fear is still there. I don't know how long any of our lives are but we are going to make the best of it regardless what has been or continues to be thrown at us. I smile whenever Eric says that he just wants to squeeze her real tight so she will never leave him and that is exactly how I feel. As soon as we started sharing Lexie's condition with our family and friends, I was prepared to hear everyone's opinion. I have never let people's opinions bother me before so it really doesn't bother me when people speak before they think. They have no control over my life so I never give it any weight. Another thing I expected was how I would be changing. I can't deny the fact that Eric and I are just not the same. Is it for the better? I feel that as long as I continue to be the best mother, wife and person than this change must be for the better. Now, what I was not prepared for was the amount of friendships I would gain and the ones that would slowly fade away. Eric replies with "If it is not in their immediate world, people would rather not talk about it nor see it." I know they would never come right out and say it but I feel that there are some people that do find it difficult to be around us or to hear about Lexie's medical needs. I am not like a broken record and only talk about Lexie's condition even though my life sometimes feels consumed by the therapist and doctor's visits but sometimes it just has to come up. So too bad!!! My world is my children and I will talk about my world. Now that Lexie is about to be 9 months old and is loved by everyone who holds her. I can only say that we are happy with our lives and are enjoying it to the fullest. I thank God everyday for bringing her to us and I only hope that I continue to make him proud of his decision. Lexie is not in any way our punishment or a reason for other people to pity us. I get to spend more time than anyone else holding her, loving her and just being in the same room makes my heart want to sing. I enjoy everyday with my children. Even more so now that we have Lexie because she has showed us life can change in a instant!

Soccer Mania

Soccer has officially started in our corner of the world. Here are some pictures from our first game. At first Eric wanted Ethan to try a new sport but Ethan had his heart on playing soccer again. Although, they have made an agreement that I think suits them both- soccer in the fall, baseball in the spring. I am loving how athletic he is becoming.

Ethan going towards the goal!

You can't tell but he is even being pulled by the arm
and yet still keeps going towards the goal.
Enjoying his snack and cooling off!

Happy Grandparents Day

With a little help from a fabric marker and a standard oven mitt we made ourselves a grandparents gift that is cute and functional.

We hope that you love them!

Growing up

This has been and continues to be a long running conversation in our house. It is between Ethan and I and about him wanting to live with me FOREVER!! This conversation took place while we were driving on base and within seeing distance of all the planes.

Ethan: OH MAN!!! Look at those jets!! When I grow up, I am going to fly the black one. I only like the black one. Look Mom!!!

Mommy: Yes Ethan, I see them but you know my rule about flying jets.

Ethan: but I want to fly jets AND live with you forever.

Mommy: Yes, but flying jets makes Mommy really nervous so if you want to live with me forever you need to be an accountant.

Ethan: I don't want to be an accountant (he has no idea what an accountant is), but I want to live with you forever.

Gracie : I live with you forever Mommy??????

Mommy: Uggh Gracie...I love you but on your 18th birthday Mommy will have the boxes ready for you.

Gracie: Boxes for my birthday!!! YEAH!!!!

Ethan: Well...I really like the black jet and I want to be a Jet fighter!!

Gracie: I want to be a jet fighter too!!!

Ethan: NO GRACIE!!! Only boys can fly jets, not girls!!

Mommy: Uggh buddy, girls and boys both can fly jets. She can do it too.

Ethan: Fine, but I get the black one and she can have a purple one.



Now I am just joking with Ethan and would support him no matter what he choose to do in life but the thought of my baby flying is a scary one. It is more for my entertainment to hear that he wants to live with me forever especially because I know he will slowly change his mind as he gets older. However on Gracie's 18th birthday there will really be boxes there! Me and my darling angel are like fire and ice.

Potty Training-Round 2

Well Miss Gracie has officially started the potty training process. I was in no hurry but she requested her diaper to be changed at every drop, so to avoid huge diaper bills we have started the dreadful process. She is 2 1/2 but I still was in no big hurry. She is doing great and has only had 4 accidents since Monday so I really can't complain. Every now and then she will ask for a diaper but I remind her that she is a big girl and big girls have to wear underwear. Plus, once I pull out the treat jar she is all the more willing. So here's to keeping our fingers crossed that I will only have to be changing diapers for one kiddo now!

Duke Shirt

I remember when we got this shirt, I thought Lexie was never going to fit into it. We got it while we were at Duke University Hospital during Lexie's stem cell infusion. She was so tiny that this shirt looked HUGE next to her and I was convinced that it was going to take her at least two years to fit into it. Well I was proved wrong once again because you can tell our little chunker has filled it out quite nicely!

Lookout Pre-K, here I come!

Monday was the 1st day of Pre-Kindergarten!! Ethan was super excited and kept asking me the names of the kids that are in his class. He has two classmates who are also on his soccer team so he wanted to be sure he got it right. We woke up bright and early and joined in on the excitable rush of parents taking their babies to school for the first day. Even Gracie was excited but it didn't last long till she realized she wasn't staying. When we walked into his class, he had the 'thanks for driving me but please leave' look, but when I started to leave he asked, "You are going to pick me up? Right?! After I assured him that I was going to be there waiting for him he was long gone. Gracie involuntary said goodbye to her brother and we were off.

However, the best treat for me was at the end of school. I could see him toward the end of the line impatiently looking for me. As soon as he spotted me he was all smiles and ran for me. At that moment I teared up. I will always remember that face. How excited his face got when he saw his mother. My friends all asked if I got teary when I dropped him off but I didn't because he doesn't really have to be there. This is a like a voluntary class and he can literally come and go as he pleases. Plus, it is only for a couple of hours and it feels like playing to him. So, even though I didn't get teary when I dropped him off, I did get teary when I picked him up. But, it wasn't because I felt like I was losing him just that I saw a little glimpse of how much I mean to him. However, next year I just know I am going to be a mess. Then I will feel like I am losing him since he will have to go to school and be there all day.

7:00 am photo shoot!

Looking sharp!

Ethan's teacher (pink shirt) showing him where his cubby is

Ethan sighing into class. My little lefty!

Gracie and Lexie on our way out

Don't worry Lexie, first day of school is hard on everyone.