Watching and Waiting.

We will check again....it's a watch and see thing.....it looks better so that's progress......we could do that......we should do this...etc etc etc.

The past few weeks we have been busy with Maelee's normal appointments but to mix it up we added a developmental evaluation, eye exam, and a hearing screening.

During her developmental evaluation we got some good news and some not so good news. Maelee is doing great with working towards her goals in PT and OT, she is beginning to use her fine motor skills more and her gross motor skills are making progress. The evaluator said she needs to keep working on using her left side and hopefully her knee wont continue to hyperextend. Her fine motor skills have taken off but she still doesn't use her pincher grasp often and especially with her left hand.

Her expressive language is blossoming every day but she is behind in receptive....really behind. This led to the eye exam and thankfully we had a hearing screen already scheduled from her tube surgery. Her eye exam was the second one she had this year. She overshoots when placing things down, holds books close to her face, gets frustrated easily when reading, tries to put herself into the television, and cannot name objects in a book. We don't know if she is not understanding or she can't see so we went to find out.

They said she is on the border of needing glasses but to come back in December to follow up and make sure........here is that wait and see thing! Another time to be patient. But all I can think is she will be 2 in a little over 2 months and we are in the prime for development.....what if she really can't see clearly, what if her world is fuzzy, what if she can't see far away..what if!?????  Learning to have patience is something I have struggled with but then the hearing screen happened.

Maelee went on a Thursday for this appointment and she failed. We had to bring her to Charlotte the next day for another test and the results were inconclusive and showed some mild hearing loss so we have to bring her back on July 5th for more testing. They said if she has mild loss there are a few things they can try or we can continue to do speech and follow up every 6 months because of her health history.

So for now we continue OT, PT, ST, and Hippotherapy.  I pray her hearing is great and her vision is perfect but I have a gut feeling one is not going to be.....Momma's feelings haven't let me down yet.
I want her receptive skills to take off, I want her to be able to understand all this world has to offer, and I want it to happen before August. August is when we have to pay out of pocket for everything. August is when we might have to make a choice between therapies. I don't know how we will do that or what we will do. But at this point I am trying everything.

I would like to continue it all but just not sure it can happen. So anything major has to happen before August. If she needs a higher brace for her legs we need them now, if she can get more than one day a week of anything we need to jump on it, if she qualifies for any more assistance now is the time. Otherwise I just don't know what will happen.

I don't know how her eye exam will go or her hearing test. No idea about her follow ups with any specialists. No clue about this dairy thing as we haven't been to an allergist but we have tried it again and now she is miserable. Maybe going Gluten free would help with sensory but I am not sure. I have researched and read and called and emailed and all I can do is watch, wait, and see.

Our sweet Peanut is such a good helper. :)

Baa...Baa....Neigh!!!!!

I am amazed just watching Maelee most days but yesterday was a day I will never forget. It is the day she said "neigh" out of no where and in the correct context to the correct animal.......I was shocked! It was the day she used her left hand to brush the horse once....just once was enough for her and to be honest it was enough for me too! :) It was the day she used her right pointer to touch the horse and his mane.....she gave a funny look afterwards and stiffened up but she did it! It was the day she won the hearts of many as she babbled and gave her sweet expressions during her Hippotherapy session!

Maelee has been working on animal sounds for what seems like forever. But you always get a response of "baa", even if no talk of a sheep or "baa" has occurred in weeks. Maelee has a mild receptive-expressive language disorder that makes it hard for her to produce the words for the right thing, understand what we are asking, or to repeat common sounds such as animal sounds with the right animal....something we have gone over and over a million times it seems. Until yesterday!!!! She was standing with her OT next to Fritz (horses's name) and all the sudden she said "neigh". No one had said this, no one made any talk of animal sounds, she just came out with it!!! I was in complete awe, overjoyed, and I can tell you this Momma cried tears of joy the whole way home!!!

I was impressed at how well her new OT worked with her. Encouraged her to make the moves in her time, use her left hand when she was ready instead of forcing which only results in a complete meltdown and makes therapy pointless. Maelee was very stiff standing away from the horse, sitting and waiting, and while getting ready. The only point her body had increased stiffness in her tone during the time at the horse was when sweet Fritz attempted to kiss her.....she was not all for that and you could see her tone change in a second. Maelee loves kisses but I think his big mouth was a bit too much at this time!

After therapy is took 5 minutes to transition, which is actually not as long as normal but something we are working on. With sensory processing problems transitioning is something that is affected as well as she is a toddler who is determined to do things her own way always. :) While putting her in the car to go home my heart was warmed at how relaxed her muscles were, I didn't have to postition her all crazy to get her in the seat or to adjust her straps. She was in the seat, relaxed, and ready for a nap. (Remember muscle tone and relaxed at two different things, I can always feel an increase in her tone on the left side but after therapy she is easier to move around and you can tell she feels her body is more in her control than her CP's control.)

We are very excited to see how she does when she is old enough to do her therapy on the horse. I used to be worried we were doing too much for Maelee, too many therapies, too many appointments, but today I was reminded in the moment that we have done it all for a reason. Many think it's too much but if you witnessed what we have you would wonder what else is out there! Hippotherapy is something we are thankful for, so grateful for the recommendation to it, and are thrilled to watch her grow and develop using this amazing method and animal!

Lee came home from work yesterday and said something that truly warmed my heart, "We always worry about what Maelee will not be able to do; dance, sports, cheerleading, gymnastics, etc. We worry because her balance, tone, and CP may prevent her from enjoying these activities as well as physically being able to do them. But maybe her calling is horses. Maybe this will open a whole world for her. Maybe she will find a love for this, helping others, or just equestrian things in general. This could be why we were lead this way. We will just have to watch and see."

In that moment I realized he was so right! Maelee has been given this opportunity for many reasons and some reasons we may be unaware of at this time. We cannot wait to watch this new journey unfold and cheer her along the way!!!

Learning to let go of "I want"

Wondering if you are doing enough, the right thing, or is there something else out there!? These are common questions I ask myself, especially after Monday night.

Maelee had a follow up appointment with her sleep doctor on Monday and was prescribed an additional medication. I being a nurse know the side effects, no the risks, but felt that this may help Maelee.......I think I was wrong, I think the doctor was wrong, and my poor baby did not have a good night!

Maelee wakes many times with muscle spasms....that is not new or something I can help her with other than rubbing her sweet little legs! But Maelee also suffers from PLMD and RLS causing her to have that creepy crawly feeling in her legs. RLS sucks! She has been on medication to help with her PLMD and has had great success but still wakes rubbing her legs and saying owww.....it's not a spasm as we can feel the tightness after this as well as Maelee doesn't bend or move easily after. Her legs hurt from RLS and so the doctor prescribed her a medication to help........

Maelee threw it up. All night and into the morning. And then when taking her back to the doctor they made the stupid comment, "It could be the new medication but it might be a virus. Just give her the medication again in a couple nights and if it happens again you know it's the medication." UMMMM I DON"T THINK SO!!!! So a phone call was made to the sleep doctor and her answer just made me feel worse. Her suggestion was to cut the medication dose in half and go from there....but know that nausea is a side effect. Nausea I can understand, I can help Maelee deal with, but vomiting for hours is not an option. Maelee is not a huge baby, we have worked hard to get her to eat with her GERD, I am not promoting vomiting......no matter the benefits. In this case the risks outweigh the benefits. Reflux children who vomit tend to ignore food, have aversions, and go backwards in growth- I don't think so!

This Momma is on a mission for a new solution. I know Maelee's legs are bothering her. It breaks my heart to see and know she is getting more frustrated with her body over something she has no control. There has to be a better solution, a natural solution....and by solution I don't mean a cure as I know that isn't out there but something to help her ease the creepy crawly feeling, something to help with her spasms from CP, something to allow her the rest her body needs. When your child just falls asleep on the floor playing you know that something has to change.

Maelee gets so upset at the idea of being in her bed to fall asleep or nap. I know we have not helped by giving in and allowing her to come in our room but when your child cries in pain there is no other response as a Momma to snuggle, cuddle, and massage those pains away! She is my child and it is my responsibility to fix this problem.......just like all the other difficulties but I am starting to realize that I am not able to fix anything and that is frustrating in itself.

I want to help her, I want to be able to give her a solution, I want to take it all away but I can't. It's defeating, tiring, and breaks my heart in a million pieces daily. I have to accept that there is no answer for me to give her except guidance and being her voice at all appointments....but that just doesn't feel enough. I want to cure her, I want to make her body work the way she needs, I want to allow her to sleep peacefully and not fear it, I want her to walk up the stairs without additional rails for help, I want to allow her to run without her braces, I want her to use her left hand without struggle and anger, I want her to be able to dance and do ballet without telling her to put her feet down, I want to see her in cute sandals and have her toes painted.....but with this list I realize the "I want" part is there.....what does Maelee want?!

 She doesn't know a different life right now. She doesn't have a way to tell us. I see frustration but is that at her body or at us for telling her how to move her body?! I will never know these answers until Maelee is able to tell us, Maelee is a strong little girl and has figured out a lot already. Having faith that she will be able to accept her life and be strong it in hasn't been easy but when I see her determination and perseverance I realize that the "I want" changes to "Maelee wants", she is growing into herself, becoming more independent, and showing us how she will do things- even if they are different than others or how we dreamed.

My dreams changed that September day in 2011 but I have realized they changed for the better. Maelee is an amazing little girl who is showing us life in a new way, a way we appreciate much more, a way that no words can describe, this life can be a scary place but Maelee is taking it all in, showing it what she can do, and is AMAZING!

Growing like a weed!

Looking back on how far Maelee has come I came across many pictures. It all started in January 2011 while I was in my last semester of nursing school. Here are pictures from the past few years in May!

May 2011: 18 weeks pregnant

It's a Girl!!!!!

 

May 2012: Maelee is 8 months old!!!

 She is full of personality! Loves to smile and has a heart of gold! Sweet Peanut!

May 2012: Maelee is 20 months old!!!!

Maelee is a fighter! She has come so far in the past 20 months of her life we couldn't be more proud of her! She is our hero! 

I can't believe how much she has grown in such a short time! She is growing like a weed and way to fast! Taking in every moment and making memories to last a lifetime! 

Swim Fishy Swim

Maelee loves the water.....well not the bath tub too much right now but a pool is her new best friend! :) She is a little fishy and we find it hard to even get her out of the pool to dry off. Swimming is beneficial to Maelee in so many ways we are beyond grateful she loves the pool!

Maelee's first time swimming in her little pool May 2012! 

Swimming is a wonderful form of therapy for Maelee. We believe it is the one place where she has better control over her body and her muscle tone is decreased. She is able to kick and move her arms freely without the resistance of gravity. Maelee is able to build muscle strength, work on coordination, and overall gain some confidence. 

 Maelee's first time swimming in a BIG pool!!! She loved it from the first moment we put her in!

She has loved the pool from the first time we put her in. She loves to go under, doesn't care if the water gets in her eyes or mouth. This year we bought a smaller pool for our backyard so Maelee could have the ability to stand as well as swim anytime she wants to or we think her body needs it. It's amazing to see how different she moves in the water, how much more coordination she has, and to hold her is so relaxing while being in the pool. We are blessed that Lee's sister has a pool at their home so anytime we need to swim more or just want to get the big pool experience that is available to us and to Maelee. Having that will be of great assistance as Maelee gets older and bigger.

Blessed to have this fishy in our life! Swim Fishy Swim! :)