Monday, May 30, 2011

ahh- back to writing!

Sorry friends, it has been a little while- I went out to dinner with 3 of my best friends, and one reminded me of this ol' blog, so I figured that I need to give it a little attention! Finally warm weather- the children no longer have cabin fever!! I have starting going back to school, along with getting certified to instruct sign language- through baby signing time, two hands productions! It has been exciting!

Aubrey is continuing to make gains, she is crawling around, and nothing on tables or on the floor is safe, to her it is all fair game! ( Tagen is actually handling it very well!) Aubrey wants to be walking more then anything, she just doesn't have the core strength/ balance- I tell her all the time " You will do it, I promise, be patient". She has about 50 signs, and is completely obsessed with baby signing time videos :) I wish she would sit in front of my flip video and do the signs so I can show them off to the world, because she makes her mama proud! Instead she just wants to eat the flip! I'm sure all the moms out there know what I am talking about when I say, when someone asks me how she is my eyes light up and I can not help but smile! I am getting nervous because she is getting older, so natural I am going to start thinking about classes and the perfect placement for her! Being in the special education Field in a school system it gets a little touch when you are on the other side, ahh Will I be able to handle everything?!? She has had a few drs. appts. and most of them have all gone very well, Cardiology- she does not need to go back for one year. Opthomology- She has a follow up, because they are saying she has small optic nerves which could effect the brain- so they might want a sedated MRI- and if they are small, she will be delayed, but reality, I am not a naive person; she is already delayed, but is a sedated MRI going to change the care we are giving her, because if it is not medically necessary to have done- I am not sure I want to put her through a sedated MRI. I do know that it is not invasive like surgery, but I do not want to put her through it, if it is just for "knowledge, or research"- anyone have any thoughts/know anything about this subject?? She will be going to see a "ENT" ears, nose, and throat doctor, because she has fluid in her ears, so she may need tubes- common yes I know, and better now then the loss of her hearing, yes, but my poor girly muffin- just something else to add to her accomplishments in her first few years! I wish I could capture everything about her and put it on here so all of you could see how happy, and how much of a joy she is. My Aubrey girl is a little diva with an attitude, and she has the "stank eye" down pat!!

Tagen turned 5 years old, yesterday and I wanted to cry- my son as grown up so much, and I sometimes worry he has had to grow up a little faster because of everything that has happened over the past year with Aubrey, It was so hard on Sam and I; I know that he picked up on it, and he never said it but I am sure it has been hard on him. He loves his sister more then anything, and I have to wonder if he knows what she went through this year. As much as Sam and I have tried very hard to not make Tagen feel as if he were on the back burner through our trying times, I can't help but wonder, if he ever felt that way. After yesterday's big birthday party I think he remembered how much we love him, and have not forgotten about him! Thank you everyone who came to his special day, and made it amazing for him. He woke up and said " I can't believe everyone who came to the house for my birthday party, and all the cool gifts I got". He appreciated everything! Tagen is in an integrated setting preschool, which means there are a handful of children with specials needs and then " peer models" one of the parents of a child with specials needs, came up to me and said, although Tagen is a bigger boy he is very kind, and treats my son so good, there are some children that are bigger then my son, and they are rough and makes him nervous, but not Tagen! The word proud does not describe the feelings I had, and it also made me realize that no matter what he will be there and understanding to Aubrey and her needs!!

Sunday, February 27, 2011

srping is on it's way isn't it?

man-o-man, this winter thing is starting to get to me!! I miss you sunshine, flip flops, cold drinks- and when I did not have to deal with bulky jackets, hats, gloves, runny noses!! OH please spring, wont you just come already!?
This winter has been a tough one, Aubrey was having some troubles with going to the bathroom, we found ourselves at the ER in Boston because she was not herself and we just couldn't not figure out why! why?? well the poor thing was so backed up and constipated the poor thing could barely move! We had her tested for Celiac disease, which usually makes people go to the bathroom all the time, it is a gluten allergy, but with down syndrome, and low muscle tone it can cause constipation. Aubrey also has some flat lining in her left year, when we had her ears tested, as of right now we do not know if her ears are not draining the wax, or if she has fluid in her mid ear, which could cause hearing loss, we will have her retested in the next month. Phewph, and there is more...
Aubrey has also started wearing sure step orthopedics on her little feeties!! She was having a hard time keeping control of her ankles, knees, and hips, these help stabilize her and she is doing an AMAZING job at standing. She should only need them for about 9 months, and they will help her to start walking which she so desperately wants to do! We had her 6 months post surgery appointment, and went better then we could have ever expected!! Her doctor does not need to see her for a year, and he said her heart sounds perfect, of course they will still monitor her, but they said it sounds amazing and the surgery was a perfect success!! Crazy to think it has already been 6 months goodness time really does fly!

My sweet little baby is becoming a little girl, her desire to be able to run around with her big brother, and play the games the other kids do, is so strong you can see the frustration as well as disappointment in her that she can not do those things yet- I feel for her because I know she wants to, and just can't right now, it breaks your heart as a parent knowing that it will come in time but right now there is nothing i can do to help her develop these skills any faster! My dear Aubrey it will come soon enough- and your frustrations will turn into pure joy, I promise!!
She is doing so many sings now, and she understands everything you are saying to her. She has become a little freshy pants, she knows what she wants, and if she doesn't get it look out world! Thats my girl!!!

Recently I have received kindergarten registration for Tagen- ahh full day- it brought tears my eyes it seems like just yesterday I found out i was pregnant with him! our early intervention PT, has brought up the option of Aubrey attending a class for 2 1/2 hours on a Thursday morning, when she turns 2!! My kids are just growing and I can't stop them!!!!

Saturday, December 11, 2010

It's been a little bit!

It has been a little while since I have had a chance to sit down and process all my thoughts. It has been very busy, and at times hard to keep up with myself. The holiday's are coming, and for those of you who get to relax, enjoy it... those like me, know holiday's is just another way of saying its time again to rush around, so everyone can see the kids and get their time in with family and friends from near and far. Hope every ones Thanksgiving was enjoyable. Ours was a little different this year, my grandparents are thankfully still here with us, and they were in Florida for the first time ever during thanksgiving, so it was very different. Although this year I was in a much better place then I was last year, and I have a lot to be thankful for.
Tagen has been enjoying school, and savoring every last moment he can spend outside until the cold gets to him, and boy did it get to him this week, he was sick all week, and naturally trickled down to the rest of the house. Although he was sick, him not going to school made him restless. To be young again and miss going to school, and if that's the only thing he is missing out on then I am happy. He is very big into trying to learn his letters, and draw pictures, although gets very upset when he "just can't". I miss when life was a simple as that, and that's the only thing I would get upset about!

Little miss Aubrey, has become a little girl, who is full of laughs. We have noticed more now then ever she is becoming a little freshy, and I have a feeling she is going to give us a run for our money. She is PROUD of herself, that she can sit independently, well now that's all she wants to do, forget about the days when she would sit on our laps and play. She is making some good strides as far a trying to crawl along with pull herself into a standing position. She recently had her 1 year eval from EI, ekkk, is my thoughts. It is so hard to see written down her delays in black and white, right in front of your face. Why was I shocked? maybe because yes I know children with down syndrome have delays, and I'm not denying that fact, but maybe I just hadn't seen any of the delays because I wasn't looking for them , instead I was looking at what she CAN do, and being proud of her for the things she HAS accomplished, not dwelling on the milestones she has YET to master. I mean her eval wasn't bad, at all, her EI team was actually very impressed, but I as a mother still had a lump in my throat during the eval, and after when they were telling me where she was. As a mother you always want to hear what is best for you children, you never want to hear they CAN'T even if it is followed by a yet, can't doesn't fit into the vocabulary us mothers make for our children. I prepared myself has best as I could but still it wasn't enough for me... and I wonder, if I made the right choice in having her evaluated. Is she on a shelf for show? or is this eval going to make the rest of her life? no of course not, it could have changed the second they stopped the eval, or a day, a week, or even years later. Aubrey has mastered waving hi and bye, giving high fives, blowing kisses, giving hugs, playing peekaboo, and pretending like she sleeping. She still does signs for mommy, daddy, all done, and more, although she is eager to learn more. She has learned to put her hands over her ears, as if to say "Stop talking to me" silly little girl! We have heard her say "mama" and "dada" maybe its us helping her say words, and she doesn't do it purposefully just yet, but we are happy she is making those sounds, and happy to turn them into words ( of course mama came first )!!! Never the less, she is still making great progress, and is bring joy to our lives everyday, along with Tagen!

Christmas is just around the corner, ughhhh, I have so much to do and I don't think I will ever be done!! I had my Christmas cards, stamped and labeled since Dec. 3rd- they are still sitting on the counter, ooppss. As they say, whatever needs to be done, will get done. hmm we will have to see about that!! This time of the year I always become, extra emotional, thinking back on memories, and watching all those commercials, you know the ones I am talking about, I tear up as soon as it starts. Old time favorite Christmas movies, and some new ones, that are worth watching. Thinking about people we were so close too, becoming someone we knew, and just thinking about how much as changed over the years, and what has always been the same! If I do not get on before the holidays, I wish you all happy holidays, and most of all a Happy new year full of new beginnings!

Tuesday, October 26, 2010

and Shes 1!

I can/can't believe that Aubrey has already turned 1! This past year brought sadness, along with great joy, new beginnings, new friendships, and lessons that needed to be learned. This month has had me very emotional, thinking back to the day I first held little miss Aubrey, and the hours and days that followed, I still can remember them like they were yesterday, even after a year has past. I often get the "She's one already WOW that went by fast." my response is "yeah for you it did, for me on the other hand, it was the slowest most dreadful year of my life." Naturally we had a HUGE first birthday party for her, and she slept through most of it, when she finally decided to wake up, she opened her gifts which she had a smile on her face the whole time, and also tried cake and frosting for the first time which she loved!!!
In this past year Aubrey has been through so much in her short life, and it amazes me everyday her strength, and I don't think she or anyone else (unless they have/are going through the same thing) will know just how much I admire her ability to be who she is. I also have to admire Tagen for everything he is becoming, and the sweet innocents he presents especially with his sister. The love her has for her is everlasting. Our family did the Buddy walk 2010 which was a great day for us, and so many other families. The weather was perfect. Tagen being only 4 knows his sister has Down syndrome which makes her special, but doesn't fully understand, which is completely normal. After the walk Tagen and I were talking and said "mom, we did the walk for Aubrey because she has down syndrome, were all those people there for Aubrey?" and naturally I answered " no many other people have down syndrome" and his response to that was " because we did the walk, do we have down syndrome now?" tears filled my eyes because he sees no difference between himself and someone with down syndrome, he doesn't feel they are different. I hope he will always have this out look, and he will spread that throughout his life to others.

It has now officially been 2 months since she had her heart surgery, and the progress she is making is remarkable. She can now sit up all by herself, with no support around her. She is starting to use signs to communicate to us (Thank you baby signing time) She has mastered 3 signs which are, mommy, daddy, and all done. She loves to clap her hands and say yayy! Aubrey understands what we are saying to her. We ask for a hugabug and she will rest her head on your shoulder and pat your back, We tell her to go sleepy and she will put her head down like she is sleeping until we say Aubrey wake up, and she pops up laughing. Dancing is Aubrey's strong suite, boy does she love to dance as soon as she hears music she will start rocking back and fourth and side to side. Although there are somethings she can not do YET, and that's a big YET, such as walking and pulling herself up into a standing position, she is beginning to be able to stand if we stand her up, which to me is good. Looking at Aubrey you can see the smile and feeling of accomplishment with every little thing she does. We have started changing over her diet, from formula to milk, and from baby food to table food, ( even without teeth yet, which are bugging her so much) She has had a great start, although we are alternating between everything right now until she is completly ready to get rid of the baby formula along with baby food.

Over this past year as person, as a mother, as a wife, as a friend, and as an educator I have grown so much, and I am truly blessed that I have been giving this opportunity to help this one little sweet girl, help change the world, Along with blessed that Aubrey picked me to be her momma. It took me a long year to get to this point, and to get to these feelings I now have, but I got there, and I will never let them go. Aubrey has taught be patients- I don't have to be in a rush for anything, and I get to cherish every accomplishment weather small or big Aubrey for fills. Not just Aubrey but even with Tagen, everything my children do, now mean so much more to me then it use to.

Saturday, September 11, 2010

busy, busy

We have been very busy in our house lately, Tagen started back in preschool, I started back to work after a year, and Aubrey is 2 weeks away from being fully recovered. Her surgery went AMAZING as I said in my last blog, and now that she is almost fully recovered we were not ready for her skill levels to jump as much as they did. Aubrey is fully off the Lasix now, and is back down to a normal calorie formula YAYYYYY!!! Her weight gain has been making great progress and she is 50% in both height and weight on the down syndrome girl growth chart! Sam and I never really knew just how much her heart condition had slowed her down , but we have quickly learned it played a huge part in her life. I feel awful not thinking it had that much of an impact on her, although there was no way for me to ever really know. I can not believe that she is going to be ONE already, where did the time go?

Since we have been home from surgery Aubrey has been able to move in her walker, backwards, but she still moves :). She has been eating more baby foods along with trying some table foods here and there, she is very picky and knows what she wants though ( that's my girl)! Aubrey has learned to finger feed herself with her puffs, yogurt melts, mum mums, ya know the finger foods for little ones. Although she has not said her first official word yet, she has been doing a great job responding to what you are saying to her, and babbling away in her own little baby talk. We are so proud of everything she is starting to accomplish, and we are confident that from here she is just going to do more and more.

Tagen is loving his second year of preschool , and is going to start playing soccer, which every morning i get asked " am I playing soccer this morning". He is growing up so fast, he's fresh yet he is so cute, some of the things he comes up with I just don't even know what to say. I end up walking out of the room laugh.

Thursday, August 19, 2010

fasting, pre-op, surgery, home

So trying to fast a 10 month old isn't the easiest thing in the world, she looks up at me with those baby blues like momma why aren't you feeding me.. broke my heart into pieces.

Pre-op was a long long day, we meet so many people, she had to go through so many tests, and we were given so much information, but not much had changed since her first echo cardiogram, besides the smallest hole she had in her heart had closed on it's own, but everything else was the same, which was a good thing. We were pleased, now for us to go home and try to have a good weekend.

Saturday we decided Tagen needed some alone time with his us, so we took him to chuck -e- cheese, and then to jaygees. Our mind was still on the fact that this surgery was in 2 days but we put it aside to give Tagen some attention.

Sunday we packed and got things ready family and friends visited to say good luck. I kept it together all day until we started to say goodbye to everyone and get into the car I lost it, this was reality I was really driving to put my little girl through pain, although I knew it had to be done. I don't think anyone in my position could eat Sunday night or sleep.

Monday morning I was dry heaving for about 2 hours, I was sick to my stomach I wanted to run away, I just wanted to get on a bus or in a taxi and take off, but I didn't... The next hours where the ABSOLUTE WORST for me. We were in a "holding room" where they had us change her from her PJs into their hospital gowns, and then they gave her the first part of her anaesthesia, I got to hold her this whole time and watch her fall deep into sleep, and then be taken out of my arms and walked down the hall where for the next 3 hours I had no idea what was going to happen. I cried for those hours not putting down her PJs she had been wearing- we had a nurse telling us what was going on in the OR, when major things happened, such as first cut, when she was put onto the bypass machine, when she was taken off, and when she was being stitched up. When I saw the nurse walking down the hall my stomach was in knots, it was really unbearable, sometimes it was to tell us what was happening, and other times it was to tell other families, either way it was so hard to watch her walk towards us not knowing what was going to be said. When they told us she was out of surgery and did great I cried some more but they were happy tears. I would never be able to tell any mother going through this that it was going to be okay because it wasn't. I will remember ever moment of this day, and I will wish and pray that will never have to happen again.

She was moved in the CICU and her first nurse was amazing, he didn't leave her side for a moment. After being out of surgery for a few long hours, she was taken off the breathing tube, and she was able to breath on her own. That night was the worst, Aubrey was not comfortable what so ever, she was tossing and turning and crying, she was inconsolable, of course I was thinking something was wrong, but it was simple just discomfort on her part. Tuesday mid afternoon we were moved into 810 on 8 east, but before we moved we had many people come in a visit Aubrey, just so they could see this little girl who was doing amazing after having open heart surgery. Our nurses on 8 east were amazing, Moura was our nurse during the day, she was just fabulous, so calm and understanding. Moura had told us that Aubrey should be the poster child for children going through cardiac surgery. Dr. Emani was her surgeon and he came in and checked up on her everyday, he was amazing, and I will never be able to put into words what he did for us and just how thankful we are for him.Tuesday night she had only had 1 IV left in her, and that was for medications that she needed to have for the duration of our stay. Wednesday went the same, she was doing amazing, able to take her medication, able to eat, laughing, sitting up, and just being herself. Thursday came around and she was little sore and cried for about an hour until the medicine kicked in and she was able to be comfortable again, and they took her out, checked her vital signs, drew some blood, and we were discharged.

Now before I get into us being home, I do need to say I met some AMAZING mothers, and fathers, but of course me being a mother I was able to connect with the moms easier. I met a women from Kentucky down in Boston with her 8 month old son who needed multiple surgeries, and had already had multiple surgeries, a met a another mother whose 5 year old daughter was one her 3rd heart surgery, her daughter had down syndrome and autism, 3 heart surgeries, I don't know how she did it, and another mother whose 4 month old son was getting open heart surgery. All three of these amazing moms were so strong for these children, and it made me feel as if I was not alone. Walking through Children's hospital you see many different things, kids with cancer, children that will never be able to walk, children just simple there for a broken arm, but we often take these hospitals for granted because we live so close, but just in Children's you meet people from all over the country. It also makes you feel blessed for what you have, and puts life into prospective, that life is to short, and you can't live with regrets, or question why, it makes you realize that their are bigger things in life, and the small things shouldn't matter.

Going home was a great feeling, we were greeted with balloons, and a welcome home sign, and family and friends. It almost felt surreal, to be home and back to everyday life. It almost felt like a dream, I felt like I still had to get ready for her to have surgery, but I didn't it was over with. A week ago today she was in surgery, and you would never know it. She is able to do almost everything she was doing before the surgery, besides laying on her belly, which is obvious. There isn't a greater feeling then to know that this is in the past and that chapter is closed and it's time to start a new one- and we all made it through, and took with us a life full of gratitude for the staff at Children's, and a piece of mind that we are that much stronger then we ever imagined.

Monday, August 2, 2010

days go by..

The days are going by one by one, so fast yet so slow. I try to forget but it wont leave my head, I obsess over things I shouldn't be dwelling on, because for that hour or so I'm dwelling on something else, I am not consumed with the fact that in 2 weeks I will be handing my beautiful daughter/best friend to a bunch of doctor- who might I add are human and can also make mistakes, to fix her heart, to do medical procedures that will help shape the rest of her life. I have watched Boston Med, call me crazy but its just something I had to do, not to mention I have DVR ed all of them and watch them over and over again, I need to know, I need to have total control I want to know exactly what is going to go on behind the doors.

There is one part that I keep imagining over and over and over, and its the part I need to say " see you good luck I will be here when they are done with you" and kiss her for luck, and watch them walk away with her, how can I do that? I don't want to give her to them knowing what they need to do, knowing that she could be in pain, and I will never know because I am on the other side of the doors. I have always tried to be this strong person that would not let anything break me, but this has done it, I am broken, if I could I would go through the surgery for her.

Aubrey is so happy, and constantly smiling, she has progressed so much over the past couple weeks, she claps, and does the sing for "more" she can almost sit by herself :) she is so full of life, and when I am around her I can't be anything but happy, but at the same time so sad because I know whats coming, she is living as if nothing is wrong with her heart, shes not worried, or scared. I am thankful she doesn't know and I can do all the worrying for her, because I have felt helpless for so long. I sat down and had a conversation with Tagen explaining that we were going to have to go to a place to get Aubrey's heart fixed so it works like his, and she will have a booboo but it will get better, but mommy and daddy wont be around for a couple days but he can come and visit, and while we have to stay at this one place with Aubrey he gets to stay at many places and have fun all day long, of course he didn't understand he responded to me with " who will watch us if you and daddy are going away" and " if she has a booboo and need band aids she's not going to use mine is she?" He's so cute, and Innocent and he has no idea what is about to occur in his little sisters life. Which is better for him, because he doesn't need to be scared about what is going to happen. I guess it is just hard, I never thought I would have to deal with all this, and I guess I am just going through a lot, I have good days and bad days, nightmares and nights where all I can is cry. I try to make a plan but I know I wont be able to go through with it. I guess these next 2 weeks before the surgery and probably the 2 weeks after I am going to learn a lot about myself, as a person, a mother, an advocate, a wife, a friend, a daughter, and a sister.