Update on our Peanut :)

Time gets away from me and I have been a terrible blogger lately...that is something I hope to fix in the coming year!

An update on Maelee: Since I last wrote she has had the flu, pneumonia, bronchiolitis, and an ear infection.....gotta love this time of year. She had a 24 hour eeg done to check for seizures...thankfully it was negative. Maelee continues to do the crazy movements in her sleep so we will be taking her to a sleep specialist in January. After the last visit with Maelee's neuro he was very concerned that her reflexes were different in both sides and she was showing her tone differences, so an MRI was ordered.

The MRI was done under general anesthesia and we were a mess waiting the LONG 45 minutes to see her again! We got the best results ever yet the most aggravating results ever....NORMAL! I am so happy that there is nothing major wrong with my sweet baby girl's brain. Her neurologist stated that it may be microscopic and will not show up at this time and a repeat scan will need to be done at a later date (we would rather skip that and just move forward). Having no known cause for Maelee having mild CP is hard but we are coming to terms with it. She is making amazing progress in all her therapies and we are so proud of her.

Over the past few weeks she has been having a few more sensory meltdowns than before so we are adjusting to this and doing our best to prevent, but any sensory parent knows this is a roller coaster you can't prevent you just have to ride out. Her communication is causing frustration. She talks.....we just don't understand. I don't speak Maelee and it breaks my heart. She gets to the point where she is so frustrated it results in a meltdown of head banging and biting....no calming will help. We are in the process of starting to use the iPad to help with communication along with continuing to use sign language.

Maelee is doing great in school! She is starting to socialize better with her peers and is doing great in play therapy! This has been one of the best decisions we made for her. She is learning to be more independent (which is breaking my heart)! My baby is now a toddler! I can't even believe I am writing that.......TODDLER!

We will be continuing her PT once a week! She is doing so good! She started wearing hip helpers to hold her hips and help build her muscle strength up. They help as long as they don't fall down- she has such short legs. :) She will also continue her OT once a week for her fine motor and sensory needs. She just got a new OT as her old one moved. Her new OT seems to really be interested in helping with Maelee and always has suggestions even about the littlest things! Can't wait to keep working with both of them on our little girl! Maelee will be in school two days a week with play therapy and they will also be working on speech with her until we can get her a speech evaluation done for communication.

Reading that I realize she is a busy little girl! When Maelee is not doing therapy she is a typical little girl! She loves her babies and loves to give kisses! We are so blessed by this sweet girl! I can't wait to see what the next year will bring in our lives!

The Month of Thankful Posts

During the month of November everyone writes their daily posts on Facebook of what they are thankful for....I generally participate but this year we have been so busy that it slipped my mind completely so I thought I would write a post instead. But it may not be exactly what you think. I have read the many thankful posts regarding good health, having everything everyone wants, blah blah blah..... but what I am thankful for is much different.

I am thankful for the challenges we have been given. I am thankful for every learning experience we have been able to have over the past 14 months. My husband and I are so blessed to have Maelee in our lives and to be surround by wonderful care providers for her. She has an amazing team of doctors, nurses, and most of all therapists. There are no words to describe how thankful I am for her therapists. Maelee is an amazing little girl and we are thankful. Thankful for each new thing she does, each day she smiles and brings us joy, and most of all each day we find something else out and are able to provide her the assistance she needs in life.

I am thankful for the diagnosis she has, thankful we are able to give her the help she needs, and thankful that we didn't turn a blind eye to our child who may be less than perfect to someone else. I am thankful we are educated adults and continue to educate ourselves in order to help Maelee. We try to educate those around us and in her life.....but we all know that isn't always successful.

This year I am thankful for my family and all that it is! God has given me the PERFECT family and for that I am blessed and THANKFUL! :)

Test of Patience

I wanted to write a post and just couldn't get started....well after a quick visit to Facebook and reading a wonderful poem that was posted I was inspired....

Patience is something that doesn't come easy for anyone, it is not something we are born with and it surely is not something that comes easy day to day. There are times in my life I have wondered if I would ever learn what patience was. I used to sit in the back seat of the car and ask "Are we there yet"....wait I still ask that.

When Maelee was born early and place in the NICU the test was there. We learned to wait and stop questioning. We learned to let God work his magic and heal our baby on his time. And when we brought her home I thought we had this patience thing under control. Well I was so wrong.

Having a baby is hard as any new parent will tell you. It is a huge change in your life, it is the biggest blessing you could ever ask for but it comes with a life altering change you sometimes can't imagine. Maelee however comes with special concerns that require extra patience and extra care.

We have watched and waited without losing our patience as she met her developmental goals either on time or a delayed. We have watched and waited with the diagnosing of her CP and now the evaluating for possible seizures...and still I have patience with that.

But what I think I am losing my patience with is all the sensory things.....My child spent last night banging her head on the headboard....Why? I have no clue! I can't explain it....she doesn't cry....she does it rhythmically and then goes back to sleep. She sometimes bangs her feet the same way, whatever she is in the mood for I guess. Then there are the nights Lee and I have to place our arms on her and hold her down to put her to sleep....most children would cry from this- not Maelee! She stops crying and goes to sleep. I think we are in the need of a weighted blanket at this point. We have had to buy new shoes this past week since she threw one out the door at Wal-Mart....refusing to wear it any longer....those are the days that test my patience. :)

So I will continue to ask for guidance with patience daily and look for answers to help my sweet peanut! And when all else fails I will laugh! :) There is nothing more entertaining than losing a shoe in the Wal-Mart parking lot!

Maelee is a unique child, she is a blessing, a miracle, and has been made with greatness! And for that I have patience.

I am thankful for this life!

It's been a while since I have written.....life has been busy. Maelee turned one! I can't even believe it! She is now 20 lbs and full of such joy! I look back over the past year and realize how far she has come and am amazed every day at how much she has learned and taught herself! I am so proud of her! I can't wait to watch every step of her journey and see what comes next. But with that said here is the post for the day....

This journey is not an easy one. It is not one we asked for but we are so blessed to have been given. I wouldn't change our life, the beautiful daughter we were chosen to raise or the challenges along the way. The past year I have learned that many do not understand the struggles in our life on a daily basis and many do not stick around to find out. We have lost friends along the way, people have stopped caring, and many are annoyed with the conversation of Maelee or may think we are asking for pity. 

Maelee is my daughter. I love her and everything about her. Our life is a bit different than some others and comes with a little bit of a different schedule but we love it, some days it's exhausting and other days I wish we could fast forward to the next....but we were chosen to raise this miracle and we are blessed with just that. I am not sorry if I talk about Maelee too much, I am not sorry if I share her therapy information too much, I am not sorry if I share her achievements too much, and I am not sorry if her doing something which may seem so small to you is such an accomplishment I want to put a billboard up.

I am thankful for the friends we do have. I am thankful for the friends we have met. The amazing group of people I have met online I can't begin to thank. There are so many wonderful people who have come into our lives and have just been there when we needed a place to cry or just say nothing at all. Some days are hard and others are not but the worry doesn't ever change. 

A friend sent me this song a few months back and I am amazed at how fitting it is....please take a moment to listen. :) 

Remember we are given one life and one one chance to live it! Enjoy what you have, the people in it, and love with everything you have! I love my husband and daughter with all my being. Maelee is our world and we will go to the end of our being to give her everything she deserves! :)

I'm Sorry.

"I'm Sorry." Those words ring in my ear like nails on a chalkboard after last week. I keep thinking about them over and over and wondering what was meant by that exact statement. Did she feel sorry for me, pity me, or just have no clue what to say? There had to have been something better to say....or nothing at all would have worked.

When we were in the NICU many people said they were sorry to us. They were sorry we were going through such a hard time, they were sorry our baby was born early, they were sorry we couldn't bring Maelee home, they were just plain sorry. But at the time it didn't really bother me. I had so many emotions that I never stopped to think about it. This past week I was at my doctors appointment giving a family health history and when it came time to give the history of my child......that's when it went all went wrong.

Of course when I said I have a daughter the nurse responded with, "You have one daughter who is under a year so she must be healthy and happy and have no health problems." Ummmm not exactly lady! So I let her know that Maelee has mild CP. And then the words I'm sorry came out of her mouth in a very hush manner with a long pause. Now keep in mind that this was a neurology appointment for me. So when she heard CP I'm sure she was thinking something and I'm sure she was sorry.......but for what I'm not sure.

I'm not sorry for Maelee. I'm not sorry she was born prematurely. I'm not sorry she has CP. I'm not sorry she has sensory regulating problems. I'm not sorry that she is unique in so many ways.

I am however sorry that this lady didn't get to meet my miracle. I'm sorry that she doesn't know the smile I see every day, the laugh that lights up my life, and the sweet babbles that fill my home. I'm sorry she didn't get to see the little girl who loves with all she has and has more life in her than we could ever hope for. I am sorry that that she didn't get to meet the angel who changed my life. I am sorry she doesn't know Maelee.

The words I'm sorry are powerful. They are just as powerful as the words I love you. Maelee is my I love you everyday and for that I am not sorry!