Pregnancy after Prematurity

Being pregnant is such a joy but when it follows having your first pregnancy end in a premature birth it is also so scary and overwhelming. I have been trying to enjoy each and every moment, avoiding the posts online about what ifs and pains, not reading what to expect because lets face it a book pregnancy is not real in any form especially after prematurity.

Over the next month I have 4 appointments at different doctors. A regular check up, labs, 17p shots, and high risk visit. I also have to do a 24 hour baseline urine......the whole peeing in a jug and keeping it in our fridge for a day is not new to me....but I didn't think it would come with this many emotions.

The last day I was pregnant with Maelee I had demanded a urine jug to collect urine, my body didn't feel right and my blood pressure was rising fast. I started collecting at 9:30 am on Friday morning and by 9:30 am Saturday morning I was done. But what happened next was not in the plan for a solution....at 9:35 am on Saturday morning my water broke. And then by 4:24 pm we had our beautiful daughter. And by had I mean she was born and off to the NICU for the next 39 days.

The emotions of doing a baseline urine should be nothing but "gross I have to keep this in my fridge" except I have been here in a bad moment in my life and so my emotions are whirling around. I remember it all so well. I remember the scary moments, the inability to move from swelling, I remember how it hurt to smile. I know this is just a baseline but I can't help but feel taken away by it.

Along with this baseline test I will be having labs drawn, 17p shots started weekly, and more checkups. Pregnancy after prematurity is hard. They tell you to stay calm and relax...but with all these appointments and the constant reminder how my first pregnancy ended I feel overwhelmed.

But I do know that pregnancy after prematurity doesn't have to end in prematurity again. I pray that we go the full 39 weeks (scheduled c-secion), I pray for a safe delivery, but I also pray if this pregnancy ends too soon that the nurses and doctors will be as wonderful this time around as last. I pray for strength, guidance, and balance. I pray for Maelee and that she understands if bed rest occurs, a NICU stay, or just being a big sister and the change it will endure on her. I pray she always knows how much we love her and how proud we are of her.

Becoming a Mommy again is so exciting and yet so scary at the same time! Thankful for my sweet peanut to love and snuggle daily to remind me that sometimes the hardest times in our lives lead to the most miraculous and amazing outcomes!

Even the smallest things bring thankfulness!

I am thankful Maelee was able to come home from the NICU, so many babies enter the world early and never get to leave the hospital. I am thankful she was able to drink from a bottle without too many complications, it may have taken a while but once she had it figured out she was a pro!!! I am thankful for the special bonding time we as her parents were given, 7 extra weeks to love her and touch her. We have been blessed with amazing doctors and specialists in her life and for that we are thankful.

I am thankful Maelee learned to sit up at 9 1/2 months. It was a day I will never forget!!! We had longed for that milestone along with so many! Maelee learned to froggy scoot herself around the house before the sitting and so she didn't stay in one spot too long.

So thankful for a neurologist who didn't give us bullcrap to listen to, understood what was going on, and just cut to the chase. I am thankful he was honest about when she "might" achieve things because she has blown those expectations out of the water!!! He is a good doctor and cares about Maelee and her progress.....I am thankful for each visit when he says "I can't believe how far she has come." Those words make a mother proud each time. 

We are thankful Maelee learned to eat solids...and although we still struggle with this daily to find a food or texture she will eat. She can eat!!!!! She can drink!!!! These may seem simple but trust me they are not things we are born just knowing....she was not born knowing.

Beyond thankful she walks!!! Those first steps are imprinted in my mind for many reason....of course it was so amazing to see your child take off walking.  But we didn't know if she would walk in the beginning and the neurologist didn't think she would walk before 2 if not later......and of course she proved us all wrong!!! 15 months and walking. We are thankful for the braces for her feet. Each pair has provided help with her walking and now running. She is able to move around freely and for that I am grateful!

I am thankful for her heart. Her love is amazing! Although she may not always look at someone or interact with them I know her heart loves them. She may not play with other children but she loves them and cares when they are sad or hurt.

I am thankful for speech!! Maelee said Mama at 8 months and used many words by the time she was 12 months old.....but they were gone one day. No love you, no mama, nothing was left......and we were back at square one with signing and praying she would get them back. Now at 2 she has words....not always intelligible but words!!! She can ask for things and has manners. We do not always understand her and that is ok.....she may not be able to find the words, or understand what we are asking, can't identify animals or other objects regularly...but she has words and those words I treasure. When your child says love you and then one day it's gone your heart will break, it will break in a million pieces. Hearing those words again have changed me!!!

Her laugh and smile are the brightest part of my day!!!! Maelee has so much I am thankful for that I could write for hours.....but with a toddler that is not possible!

There are still so many things I wish she could do, things that worry us, things the doctors worry about....but through it all she is Maelee. And Maelee is definitely not someone who will stop learning and growing anytime soon. She is stubborn and strong willed.....and we are blessed and thankful she is this way!!!!!!

Not enough thanks in the world!

Therapy and Therapists.......those are two things we will forever be thankful for. Maelee has been very lucky to be able to participate in many different therapies since she was 6 months old. We have had our good and bad therapists but I truly believe the group we have now are the best for her and will push her to achieve great success!!!!

Maelee participates in PT, OT, CBRS, ST, and Hippotherapy. We couldn't be happier with her success in all the different types of therapies, the wonderful gifts we have been given through therapy, and overall watching her grow and develop has been amazing!

Our weeks may seem over scheduled, crammed to the brim with appointments, but we know that without these appointments Maelee would not be doing so wonderful. To watch how much she has changed from the beginning and really over the past few months has been amazing. Her therapists and doctors are all in awe of what she has achieved! And without the amazing assistance of her therapists we know this wouldn't be possible.

As parents we try and help our children but when it comes to a child with special needs we have no clue where to begin. The assistance and lessons we as parents have learned from the therapists along with the suggestions for our home (ex. stair rails for Maelee) we have been able to help our precious miracle along this path. If I could say thank you a million times to each therapist it wouldn't be enough......there will never be enough thanks in the world for all they have done and helped with.

So when people look at our schedule like its crazy, or think we are pushing Maelee too much I just remember to be thankful for the opportunity to have all these therapies/therapists in her life and that is all that matters. Looking forward to all that she will achieve in life and celebrating each and every small milestone!!!

Big Sister!!

Today I am thankful for the ability to be a Mommy! Not only do I have the most wonderful daughter in the world we have been blessed to be expecting number 2!!!

Being pregnant after having Maelee 7 weeks early and all the other complications that occurred makes things a bit scary and filled with worry. I am trying to take it one day at a time, focus on how wonderful it is to be pregnant again, and just know that God has plans and we will just wait to see what happens.

I am considered high risk for many reasons. With that comes extra doctor appointments, a shot in my thigh once a week for most of my pregnancy, and close monitoring to keep this baby inside until a scheduled c-section at the end of May 2014.

I want to keep this child in and feel what it is like to bring a baby home from the hospital when I am discharged, I want to know what it feels like to hold my child before days pass, I want to know what it is like to kiss my baby without wires and alarms going off....I want to know how it feels to feel like a Mommy the moment this baby is born.....  But with all those wants that I have no control over the number one thing I want is this baby. So that may come with some hard times or it could go smooth the whole way....we will stand by and watch this child's story begin and see what God has instore for him/her.

 I am thankful for the ability to carry a child when the odds were against me not just once but twice, I am thankful that Maelee will be given a lifelong friend and sibling at the same time, and I am thankful that Lee and I will get to experience all the wonderful baby things again.

Maelee will be the most amazing big sister ever and being able to watch that connection is something I am beyond thankful for! Our sweet peanut will have tons to teach this little one!!!!

Being Thankful

During the month of November everyone on facebook writes their "thankful posts" each day. I have participated in this the past few years but this year I have decided to blog what we are thankful for. I know I am a few days behind in starting but that is what happens with a toddler running around. :)

Over the past 2 years we have been shown what really matters in life, what we are really thankful for, and how blessed we are. The number one thing I am thankful for is God. His healing power and ability to take away all the darkness during those first 39 days of Maelee's life in the NICU is something we are truly blessed to have experienced. He can perform miracles and Maelee is our miracle.

I am thankful for our friends and true family, not just the people who are blood related (because we all know blood doesn't mean everything) but the people who truly love and stand by us throughout everything. We have been shown over the past year how selfish and hateful people can be but in the midst of all the heartache God has shown us what real love and compassion is about. We have been shown our true family and for that we are so blessed. I am thankful Maelee has one aunt she is able to see often  and who truly loves everything about her, her Aunt Megan was not sent to us by blood but by love. She is a wonderful person and has so much love to give. We are thankful for her and blessed to have her in our lives as well as Maelee's! :) This friendship happened by accident but I am grateful because not only did I gain a sister by it, I also was blessed with the most handsome nephew!

I am thankful for my husband, Lee. He has stood beside me and is my best friend. I can't imagine anyone else to enjoy life with or to experience the heartache with. Life has so many ups and downs and I am glad we get to ride this roller-coaster together. I am blessed to have him in my life!

Well that was a quick catch up....Now to try and stay on top of my thankful blogs this month. I can't promise a post everyday but I will give at least one thankful item for each day in November......I may have to list more since we have truly been blessed! We have a living breathing miracle in our home and that comes with tons of thankfulness!!!

Quick update and cute photos!!

Finding time to blog with a 2 year old is sometimes challenging. I realized I hadn't written an update in a little while so it was time.

Maelee is doing amazing! She is talking, and by talking I mean actual words we can understand at least 50% of the time!! This is a huge achievement. We went through many months of frustration and confusion over her needs and what she was trying to say.

Maelee had been fitted for a Spio Compression shirt earlier this month and it has been a wonderful purchase! Her attention is that of a 2 year old plus sensory procession difficulty...which means sometimes she is everywhere. It has helped with her movements and spatial awareness. The shirt is hot pink and black and has velcro for compression needs. She wears it to therapy, school, and at home during times we are doing things that require concentration or working towards therapy goals.  She loves deep pressure so this is the perfect tool for her.

Maelee received her new pairs of glasses and has been keeping them on for a couple of weeks now! Her plastic frames are cute but she would get annoyed when they slid at all so we decided to go with pink metal frames with wire to wrap around ears for comfort. She looks too cute and we can tell a huge difference in her sight and squinting. We have a follow up in a few weeks with the eye doctor and am so happy we will be able to say she is wearing them.....for a while there we were worried she would need other interventions but hopefully these glasses are doing the trick.

We have decided to hold off on the developmental/behavioral pediatrician at this time. We want to let her keep working on her current goals and while she is doing so good we don't want to introduce anyone else in her life. She will be following up with her sleep specialist in the coming months and hopefully we won't need another sleep study....but I don't know how promising that will be.


Maelee has made some amazing strides over the past few months and I cannot wait to see what happens in the coming months and years. God entrusted us with this miracle, this precious child. And we will live each day to help her grow, learn, and become an amazing person!!! :) Things in our life our changing but we just know Maelee will continue to show us love and how much heart she has in all she does!!! :)

Thank you for helping us along this journey!

When I began this blog it was a way to write everything down so one day Maelee would know her whole story. But it seems that over the past two years this blog has helped us find answers, meet many amazing people, help others, and really celebrate our daughter's life!

So many things change in life, whether it's a quick change or one that takes a while. Maelee has changed so much over the past two years. She is growing into her own person with a wonderful personality and a heart that is filled with love. She has physically met goals, exceeded expectations, and really thrived in all her therapies.

The support that has been given to us by not only friends and close family but also strangers is amazing! Maelee will grow into nothing but greatness and we love everyone for following along this journey called life! :)

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!!!

Things You Need to Realize

These past two years have been filled with challenges and situations that have really made me think. I have sat by and listened to some very unkind remarks, questions, comments....although I know they weren't made to be malicious, they hurt, the situations were uncomfortable.
As a special needs parent I find myself realizing that the world is not educated in special needs at all. They are not educated on topics that matter, conversations that matter, but instead things are said, asked, and done that I truly can't wrap my mind around.

Here is a list of things that everyone needs to realize:

~When we walk into a medical office that we have been to a million times....Please do not ask me about my child like you have never met her or heard her history. Instead open that computer in your hands and read BEFORE you walk into our exam room. It shows me you don't care when you don't know.

~Please do not say you "understand" when you don't. This goes for doctors as well as everyone. Raising a child with special needs may not seem hard on the outside but when I say I am exhausted.....I really am. Understanding is something you can give with empathy and listening. Sometimes listening is the best medicine.....you don't have to understand or agree with our choices but as a family/friend please just listen to what is going on and why I am concerned.

~Just because Maelee is not in a wheelchair does not mean she "really" doesn't have CP. This one drives me crazy. If you spend any amount of time with her and watch her play you will see the gait difference, how she uses her right side most, and most of all you are not a doctor so please don't act like you know it all. Even finding a physician who knows anything about CP has become a challenge.

~Please be honest with me. If you have questions ask...don't just google everything and then roll your eyes......this applies to doctors and other individuals. I promise you I am educated in all that is going on..........I could have a degree in my child. When I tell you something is concerning, IT IS CONCERNING FOR A REASON. Trying to find someone with compassion in the medical field has been a challenge and finding help for Maelee is not always easy but I am up for the challenge today and forever.

~"Every child is different." Yes I understand this, everyone is different. Please don't use this as an answer to my child's concerns. Maelee is unique and we love her for that. She has been given challenges you can only imagine and her life has just begun. I know everyone develops and grows differently. Maelee is at a 14 month level in her fine motor, 16 month in gross motor, and does not use more than 15 words.....and most are repeating us. So as you can see she is behind, so when I say these things out of concern I don't want to hear "every child is different", instead try listening and showing compassion.

~When someone tells me Maelee seems "normal" I want to scream. What is this "normal" you speak of???  Maelee is doing amazing but what you need to know is all the hard work she puts into just making it through the day. Her determination and fight are something to admire. I don't want Maelee to fit in your "normal" category....I want Maelee to remain Maelee the rest of her life!

~Toddlers and children thrive off of routines, I know this. So when I tell you we have a routine and it is something we can't waiver from please understand. Maelee not only has the need for a routine because she is a toddler but also because she has SPD and routine makes her world go round. If we don't give her the right cup, allow the nighttime routine to be perfect, change her schedule without notice, don't allow for proper transitioning time, etc. Maelee WILL meltdown. She is not "spoiled or not punished, she can't control what happens and no matter what we do to stop it she has to calm herself.....and many times this takes a long time.

~Comparing your child to mine is hurtful and unkind. Comparing how she learns, talks, walks, grows, eats, or anything else is wrong. Do not compare you child to anyone's child. People need to realize that yes all children do things at different times, but telling me your child can say all there alphabet while I'm telling you Maelee's speech is regressing is something that completely breaks my heart. I feel bad that you can't see the amazing child before your eyes just because she can't name all the animals or make the correct animal sound. She is amazing and I am completely proud of her. She walks, talks, sings, bounces, rocks, plays, and most of all she is a miracle! So when your child does something amazing I am proud of them. Just remember to return that proud feeling even if my child doesn't do things on your time frame.

We have been blessed with a miracle. Our amazing sweet peanut continues to teach me and allow me to learn from her everyday. She is filled with compassion and has the greatest heart to offer. Her love shines bright.  :)

Too Many Appointments

It has been over a month since I wrote a blog and we have a ton of updates to fill you in on. So here goes.....

Maelee is doing good, we have the good days and the bad days but overall she is precious! :) She has been a trooper with all her appointments and therapies and still finds a way to smile during the day. Her personality is so funny, she is loving one minute and pretends to kick the next. I am just proud she can raise one leg up and not fall over every time. :)

Maelee had her ABR scheduled for last week to check her hearing and figure out a plan....well it was completely unsuccessful and resulted in a horrible sensory meltdown. I felt like we spent 2 hours torturing her just to be told they were going to do it under anesthesia on Sept. 4th! So we still have no answers to her hearing but it is becoming more of a concern.

She also will be going to the pediatric eye specialist next Friday to figure out if anything is going on with her vision. She constantly squints the right eye, her depth perception is terrible, and if she could sit inside the television to watch it she would. Her left eye sometimes does the floating in and out which they have been watching but we will see what is going on. So no answers to her vision yet.

She was seen by a Pulmonologist about 4 weeks ago to discuss her lungs and then schedule an appointment with the partner allergist. She is now on an inhaler two times a day....... completely impossible but we are trying everyday! :) Her lungs are not matured enough and after going through her records he feels she has BPD (Bronchopulmonary Dysplasia) and it has caused her lungs to take longer developing. So we are using the inhaler to help the best we can so maybe this winter she won't live with a nebulizer attached to her. He feels she will have the diagnosis of asthma but doesn't want to give her that yet....and we are just find waiting for that.

Maelee will be getting AFO's in the coming weeks and has already been casted for them. Her knee hyperextension has not stopped and this will help as well as keeping her off her toes. Of course we picked out cute colors and made sure they would be stylish. I would be lying if I said I wasn't worried that others will notice them more....they are not something you can hide.....

A big concern right now is Maelee is experiencing a speech regression coupled with a lot of meltdowns and behaviors. Her therapist are concerned as well but right now we wait to see what happens. The meltdowns have become so much the past few days that it is hard to even take Maelee out to a store or restaurant without her being overstimulated....it completely breaks my heart. There is nothing you can do to console her and as a Mother that is the hardest part. She has a wonderful team of doctors and therapists but I can't help feeling we should be looking elsewhere for assistance in this matter. Lee and I both know in our hearts what is going on.....but to find someone else who does is never an easy task.

So there is a quick update but the biggest thing is in less than 2 weeks she will be 2!!!!!!! I can't even believe how much she has grown! Our sweet Peanut is growing up way to fast!

My Baby is a Star and so are the People Helping Her!!!

Maelee was in the local newspaper this past Saturday!!! I of course bought a million copies and have saved them, mailed them, framed them, and will treasure them forever!! The place where Maelee receives Hippotherapy was being recognized and what better child to get a photo of then my sweet baby....I mean she is cute of course!!! Take a look at the link below for the full article in our local paper. Enjoy! :)

Article in Local Newspaper

Obstacles can make us or break us.

The past 2 months we have been dealing with the possiblity of Maelee having hearing loss....possibility...

On July 5th she had her third hearing screen which showed the same thing as the previous two.....hearing loss. They are thinking mild and on her left side. She is scheduled for an ABR test on August 15th to learn more before the next steps.

An ABR (Auditory Brainstem Response) test also known as an ABRE tests to see that her inner ear and nerves are functioning and what is the lowest frequency they are able to pick up. It usually can only  detect down to 70 db...which mild hearing loss is at 15 db in children and she is around 30 db in her left ear at this time from what they can tell. So they will combine this test with the previous ones and hopefully come up with a game plan.

I was hoping when we went July 5th she would hear everything, it was just a mistake the two times before, that her hearing was perfect, but I am her Momma and I knew better. I knew that when I talk to her on her left side she doesn't always hear me. I knew that when the t.v. is on she wants it turned up and brings the remote to you to adjust the volume for her. I knew that when she is learning objects in a book unless you are on her right side she won't even try to repeat the words. I knew that when she does something wrong trying to explain to her from a distance is pointless. These are all things and more that we have noticed but just didn't pay attention too. She's a toddler, she has a lot going on, it's "normal" for her to ignore your, it's "normal" for her to speak gibberish all the time still......that's what everyone said so we just went with it. But now I know our hearts were right and our sweet baby is not hearing what we hear, and we should have helped sooner!

Of course the guilt set in, the heartbreak for her future. One more thing. One more obstacle......what else would Maelee have to endure. She has CP, SPD, PLMD, RLS, Food Allergies, possible asthma, GERD, now hearing loss!!!!!! MY POOR BABY!!! but wait these are all things that make her the sweet, loving, quirky, adorable, 22 month old I love. There is nothing more precious then when she points her finger and has a whole conversation with her babies....we may not understand but she knows what she is saying and she says it with confidence! :) She is proud of her self, she is a happy toddler, she is growing into a precious little girl, and she is loved and loves others with everything! One more obstacle is nothing for her.

If she has to have hearing aids we can get ones with bling, animal prints, or something diva like! You know my baby is not going to wear no plain looking things every day! :) She is a diva! :)

"Limitations"

"Level 2: Walks with Limitations"

Those words were written so big (or what seemed to be the biggest letters I ever read) right on top of Maelee's chart....well the first page anyways.  Monday I took Maelee to get her velcro replaced on her SMO braces again.....no idea what this child is doing but the velcro just rips in half randomly! While in the room having the technician adjust and check fitting on her feet he opened her chart and right there were those words.....but what really stuck out to me was LIMITATIONS.

How dare they write that, how dare they say that about my sweet baby, how dare they put it there for me to see. I know what the levels are for gross motor function, I knew she of course fell somewhere on it, and even in level two, but limitations. One word really bothered me about the whole thing, one stupid word.

Yes, she uses braces, has difficutly balancing, etc. but that is ok. What she doesn't have is limitations on how much she fights, her determination, love, hope, strength, and resilience. These aren't things no one can limit her on, no one can take away and she definitely is going to continue to  share them with the world one day at a time. 

She is not limited on the possibilities in life, in her dreams, and all the greatness she has and will achieve. So she may walk a little different, move a little different, tire very easily but those things are nothing compared to her limitless love for life! 

I always find myself aggravated at the things I read. When I read evaluations and it states Maelee is grasping like a 9 month old....I get mad and aggravated. But then it hits me like a ton of bricks! What an accomplishment. There in plain black ink it says she used her left hand without being prompted!!!!! OMG!!! Those are words I had never read before, who cares about the stupid month level, my baby used her hand to pick up things on her left side with no cues 3 out of 4 times during that evaluation!!! Take that limitations.

My baby walks up the stair with a rail, will go up with her left if she can use both hands to pull up on, she WALKS!! Take that limitations. My sweet miracle is using words, even phrases, and learning to communicate every day!! Take that Limitations.

So the next time I see this crazy word I am going to say to myself I wonder how she will defy odds, beat the "expected" and truly show those "limitations" they mean absolutely nothing!!!! 

My sweet peanut is a miracle and she is showing everyone her limits in life are endless!!!! :)

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!!!