Reality Check

Over the past 2 years many things have been said about our parenting skills, need for answers, and why we push so hard for understanding from those who are suppose to be close to us and love our daughter.
Things have been said to suggest we are looking for attention and that Maelee is just "fine". People have made accusations that we have medically harmed our child to make her get diagnosed all for attention. Some have even said that we would put glasses on her because we "feel like it".



To the person/people who need a reality check, to those people who would say such hurtful things about us as parents, and to those who are so ignorant that they can't truly see the world around them:

You will never know what it is like to have your child be born and not breathing. To have a color and shade you would never expect your newborn to have. To watch your child be hooked to tubes and wires, to not be able to use their lungs on their own. To be rushed to another hospital when their heart is failing and kidneys are not working correctly. To stand by when nurses give your daughter the care you are suppose to be providing. To wait days to hold your child for the first time and then it is scary as hell because what if one wire gets moved or doesn't work....your child needs them to survive!

To then take your baby home after 39 days and be scared to death they will catch a cold...something most parents don't care about. To have family/friends judge you when you make the call to stay indoors during RSV season so your baby doesn't fall in the percent of children who die from RSV each year. To have appointments where they poke your child until they become complacent to it. To watch their skills not progress and have others compare their baby to yours.

To know that something is wrong and have everyone to tell you to wait and see. To hear the earth shattering utterances of Cerebral Palsy and be told that she may not walk until she is over the age of 2 or may not ever use her left hand the same. To be told your child has sleep disorders and has to be put on medication just to rest a little....which still is not enough for her growing body. The reflux that never seems to disappear. The possibility of asthma and how terrible her lungs are....the worry of another FLU season approaching.

Sensory Processing Disorder is something many will never understand. But the heartache of having to change your child 5 times because the clothes hurt them, or they won't swallow their food correctly because it doesn't feel right. How about when you want to hold your child and they push you away and say ouch.....that I will never be able to explain to you. When Maelee has a meltdown, I'm not talking a tantrum because she didn't get a cookie but a meltdown to the point that no hugging, kissing, touching, or anything from you as a parent will help calm her....she has to do it in her own time. That is something I cannot explain to you, the heart ache you feel when you are unable to help your own baby is something I wouldn't wish on my worst enemy.

Watching your child have muscle spasms each morning, not be able to stand up some days until her legs are massaged and rubbed and the screaming of ouch subsides. Trying to convince her that her AFO braces will help, she needs to wear her glasses, and how to adjust her head to help her hear better. Mild Hearing loss may sound just that "mild" but it can affect her speech and attention the rest of her life, so to suggest she hears "fine" when you are never around my child is annoying. To suggest we would just get her glasses because we felt like it is insane...you try and get a 2 year old to wear glasses. It is a battle we lose everyday but continue to try because we are her parents.

We have specialists in every field it feels like and therapists who have become family to us. Maelee spends most days in therapy or school and we are grateful. No We don't do it for a "babysitter", we do it so she can have the best life possible. Our home has sign language cards all over, a trampoline, tunnel, yoga ball, and color chart on the wall....our home has been turned into a therapy office, school room, and a play room for our toddler all at the same time. We spend countless hours trying to reteach her the words she has lost along with new ones.

Watching your child have favorite words and gibberish all the time to only jabbering is heartbreaking. To only hear I love you one time and now she can't say it......again you have no idea. Ball is a word she loved and learned easily but it took us 3 weeks to get her to say it again...she had forgotten what a ball was. Please don't say you understand because you don't. You don't have to watch your child pace in circles to calm herself after too much activity or too many people.

The need for routine is a must in our home and we abide by it. We aren't' those people who can have Maelee sleep anywhere or nap anywhere....she won't do it and with 2 sleep disorders napping is a must for her to try and catch up with what little sleep she is getting at night. For sensory regulation a schedule is a must. Her body needs it and we allow that to happen. We will make exception but it has to be a big deal for us to bend a little.

Maelee has special needs and that is just fine with us. No we do not use her needs to get attention but we do however use them to make connections with people, help others, and in return have others help us with anything from research, to doctors they recommend, to the simplest act of having something to cry to. It is not easy, this is not how we planned parenthood but we have loved every minute and wouldn't trade Maelee for anything.

I pray daily that you can get over the blame and realize how amazing God has created Maelee to be. Her uniqueness, personality, and love are something the world is not truly ready for! She loves with all her soul even through a meltdown or bad day. Her heart is something I treasure and we will protect at all costs.

I know she will look back one day and  be thankful for all the appointments and therapies. She won't look back and ask why we didn't do nothing....because if we did nothing Maelee just might not be walking, talking, or living the life she is! She is our miracle, our precious baby, and we would stop at nothing to get her the assistance she needs. If you can't understand that as a friend, parent of your own children, family, or acquaintance then I cannot help you and maybe it's you who needs the reality check in this crazy life.

Sincerely-
Momma to One Sweet Peanut

New Seasons Bring New Changes

I haven't posted much lately since we have been busy to the max. Things are changing for Maelee, some good and some questionable but either way we take it with a stride and keep pushing for answers, watching her determination, and standing in awe of what she is capable of!

Maelee got new AFOs this past week and what a change it has been. To see her legs point the right direction and her heels not come off the ground are wonderful but what amazes me the most is her knees are not allowed to hyperextend and with that she moves so much easier. Of course with new braces comes challenges of relearning how to do somethings correctly. One of the biggest challenges is stairs at this moment.....she has to use muscles she has never used before and really struggles after just 2 stairs but I know she will get there. Watching her walk on uneven surfaces is still hard since her balance is not the best however this week she was able to catch herself much better before she landed on the ground. One thing that really impressed me was her ability to go from sitting to standing, it's like her muscles finally are getting in sync with her body!

To aid or not to aid that is the question of the week!!! Maelee's ear function came back "normal" but what this meant we weren't really sure. After speaking to the doctor and reading the results ourselves, Maelee has mild hearing loss in her left ear and minimal in her right ear.....so what next!? As a team of parents, doctors, therapists we have decided to see what she does. Watch her and repeat her behavioral hearing screen in 6 months. She is learning new words and when she is in doubt we make sure to say it clearly and on her right side...since that is the better ear.  She may get hearing aids in the future and we are ok with that, especially to help her learn everything she is capable of knowing. But for now we have to sit back and watch what she can do, only she and God know what her plans are and we are just along for the ride.

Maelee turned two September 3rd and this not only means she is growing way to fast for the Momma to wrap her mind around but that she finally gets to stay on the horse for the whole 45 minutes in Hippotherapy!!!! Watching her last Thursday on Cappy (such a sweet horse) my mind couldn't wrap around all the amazing things that were happening in those moments. She was more relaxed, her muscle tone was decreased, her core strength looked better than it ever had, she was saying words like she had been talking for years, and most of all her smile was from ear to ear! She was engaged with the staff helping her, she was taking in the whole world around her, she gave great eye contact and followed directions well. She touched the horses hair, used both hands, and held on with such a grip. We feel 100% in our choice to start this therapy and just know that it will make such a difference for her sensory processing and physical growth.

With all the changes happening I want to always remember to take in each moment, treasure each step of the way, and wrap my arms around this miracle every second of the day! Our sweet peanut is growing up, changing, and becoming the most amazing individual! Her determination, strength, stubbornness, willpower, and love are just a few of the attributes that make this little girl the biggest blessing around! Our miracle is showing the world what she is made of.....pure joy and love! :)

"Eyes"

These past few weeks have been filled with many appointments for Maelee and the upcomming weeks are just as equally busy. This always seems to be the time of year that all the specialists want to see our precious angel!

Last Friday Maelee was seen by a pediatric ophthalmologist who specializes in different disorders of the eyes as well as being highly referred to us for her prematurity and neurological concerns. Her doctor was amazing. She played with Maelee, spent time with her, and even put drops in with not one tear and only smiles.....I was shocked! This was the third eye appointment this year and it was shocking to see someone take the time to spend with Maelee and let her work through eveything she needed to....a 2 year old is no easy task and this doctor knew exactly what to do! :)

Maelee was diagnosed with Accommodative Estropia, which is a type of Strabismus. Maelee has been squinting one eye frequently, you can watch her little eyes turn in on occasion, and for the most part it has really been noticed during fine motor skills......the squinting became the only way Maelee could do certain tasks. 

"Accommodative Estropia is a common form of Estropia (eyes turning inward) that usually occurs in children 2 and older. When the child focuses the eyes to see clearly, the eyes turn inward. The crossing can happen in one eye or both. Glasses reduce the focusing effort and often straighten the eyes, some children may need bifocals or patching therapy as they grow. "

"Strabismus is a visual defect that causes the eyes to go in different directions while focusing. Strabismus is common among children with disorders that affect the brain such as Cerebral Palsy, Down Syndrome, Hydrocephalus, Brain Tumors, and Prematurity. It is not something the child outgrows but training the eyes to see correctly and use both eyes to visualize is very important."

Maelee got glasses last Friday and it has been a battle to wear them. She is a very sassy little girl and does things on her own time....so I pray that we keep working with her and she will find that they help her and realize how adorable she looks! 

For her birthday she was given a sweet baby from her Aunt Megan who has glasses....what a great idea!!!!! Maelee calls glasses "eyes" which is so precious! I just wish she would wear her eyes more! Since she got her new baby with glasses and will be getting new AFO braces I went ahead and made little braces for her baby! 

Looking forward to having Maelee see the world without struggle!!!