It's been too long!

I can't believe I haven't wrote a blog since November of last year…..that is 7 months of updates to fill you in on. And a lot has been happening!!! Where to begin…..

Maelee is doing amazing!! She is doing better than we could have ever dreamed of and we are so thankful for her team of therapists, doctors, and supporters that have encouraged her along this journey. Maelee was seen by a developmental pediatrician back in January who said a lot of things we knew and suggested things that we have to wait and see on…..always wait and see.

Maelee was recommended to start feeding therapy and has since changed her OT time to a group atmosphere that involves feeding and she is doing wonderful! The interaction with the other children is a plus but so much more is the learning to eat without swallowing, stuffing, chocking, or scaring everyone around us.

Maelee continues to do PT, OT, and Hippotherapy once a week. At the moment she is not in speech….but she has words!! We switched her speech therapists per the pediatrician recommendations but felt the drive was not benefitting anyone (45 minutes each direction for 30 minute session).  Once Lorelai was born we have been amazed at Maelee's speech and vocabulary. I don't know was sparked her little brain but something did, it could have been us being home with her so much, the birth of her sister, or she just figured it out. She still has lots to do to catch up but she is making progress daily.

Maelee was having some strange pains and muscle spasms in her legs throughout winter (along with waking up crying and not wanting to walk) and after a visit with the neurologist he scheduled a MRI of her spine to rule out anything that could be causing it other than her CP. The MRI was normal and it was just her CP, this is one of the rare times I was thankful it was just her CP. She was started on a medication to help and it has made a huge difference. She still has days where she wakes up not wanting to walk, where he legs are bugging her, or just when she hurts…..but those days are less now than before the medicine.

In the coming months we are going to go through the process of doing evaluations and enrolling therapy through the school if she qualifies. This is a great thing that is offered to children with special needs and will help financially when it comes to paying for therapy. I have been doing my research and talking to other mothers who's children have IEPs (Individualized Education Plans) so hopefully I am prepared……a bit nervous we won't ask for enough or won't get what Maelee needs.

So overall Maelee is doing amazing!! She is growing, thriving, and becoming such a sweet little girl and now a big sister! More on Lorelai in another post! :)

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!!!!