Back from NJ

Saturday night we left for NJ. We made the looooooong drive through the night and made it around lunch time Sunday. We had a little time to kill so we drove around Summit for a little while to find the hospital and to see what was around. We ended up coming across a really neat live nativity. After that we called it a night because we were all pretty exhausted.

The next morning Leila had her pre-op appointment with Dr. Nuzzo. It was the first appointment of the day so we had the rest of the day to play. We realized we were less than 30 minutes from Liberty State Park where we could catch the ferry to see Ellis Island and the Statue of Liberty so that's what we did since none of us had ever seen it in person. 

Tuesday morning we had to be at the hospital at 7:30 for 9:30 surgery. They let me go back with Leila to the OR and stay with her till she was asleep which was nice because she was able to stay calm. The doctor came out and told us everything went well and then the nurse came to take us back to see her. She was really irritable (who isn't when coming off anesthesia). It took a little while and quite a few medications to get her calmed down and resting. After a while she started to come out of it and wanted to eat and drink. They didn't put casts on her. They let us use her AFOs as a cast so that was nice. Her incisions really are tiny. They gave her good medicines that pretty much just knocked her out so as soon as we got back to the hotel she was out for the night. 

Friday morning we got up really early and hit the road again. We only stopped one time for lunch and gas and pushed through and got back to Nashville around 6:30. Leila was a trooper. I stayed on top of her pain medicines to make sure she was comfortable. She only had one incident where she was having a muscle spasm which they say is pretty common right after a surgery like this but I gave her medicine and it almost immediately went away. 

She has still been pretty out of it because of exhaustion and medicines but we are starting to be able to get her off of some of the medications. We can already tell a difference in that her legs feel much better and she can straighten them out no problem now. We can also tell a difference in her arms. Last night she was reaching really high to hit her cousin in the nose. She thought that was hilarious. We can also tell a little difference in her core. She will have to relearn some things and get used to her new body but I think this was the right decision for her and I can't wait to see the full effect when she's over the after affects of surgery!

Prayers as we go to New Jersey

           Several months ago, I kept seeing a procedure discussed on a CP page that I follow on Facebook. It sounded like something that would be good for Leila so I started researching. As of right now there are only two doctors in the whole US who do this procedure. One is in Texas and one (the one who started the procedure) is in New Jersey. It's called SPML (Selective Percutaneous Myofascial Lengthening).

           As the name suggests it is a lengthening procedure that will help the muscles/tendons work more normally. We have thought long and hard and prayed about this and we feel like it is something we need to do for Leila. Her developmental neurologist at Vandy recommended the doctor in New Jersey. I made the calls, sent the paperwork and videos, and got the process started. I got the email back saying that Leila would be a good candidate. So, here we are! We are going to New Jersey in just less than 3 weeks!

           This surgery could be life changing for Leila! There a lot of reasons we are choosing this procedure over other procedures that can be done here. TRUST ME, I have done the research and we feel this is the best option for Leila. We are scared, nervous, anxious, excited...just about every emotion you can imagine. This is a big undertaking. We hope you will pray for us to have safe travels and that this procedure will be completely beneficial to Leila. 

           If you would like to learn more about the procedure and why we would choose to go all the way to New Jersey over having one of the traditional procedures done here you can visit Dr. Nuzzo's website. There is a TON of information there. Here is a link to a FAQ page about the procedure. http://www.pediatric-orthopedics.com/Treatments/Muscle_Surgery/Perc_Lengthening/FAQ-_Percs/faq-_percs.html

           I'm also open to questions. Feel free to ask!

           

A Way To Donate

As most of you know Leila was diagnosed with cerebral palsy just before the twins' first birthday. Immediately she started intensive therapy. She sees her speech therapist, occupational therapist, and physical therapist every week. She also attends a developmental preschool two days a week. We also continue to check in with her eye doctor, neurologist, as well as other specialists.

Along with going to therapy, Leila needs special equipment to use at home. Everything in the special needs community is very expensive and we get very little help. So, we have opened a PayPal account in Leila's name that is directly linked to her bank account. If anyone feels led to donate we would be forever grateful for the help!

Here are a few examples of things we are needing right now...

A gait trainer. Her therapist wants her to have a Kid Walk (pictured below). This will aid her in learning how to walk. Cost: around $2500.


The GoTo seat by Firefly. This is a lightweight seat that would help support her in any kind of seat. I could actually take the twins to the store with me by myself because Leila could sit in the cart. She could sit fully supported in a restaurant high chair (or any other chair) among MANY other day to day uses. This would help our lives in so many ways.
Cost: $265


The Upsee Harness. This would allow Leila to be strapped to an adult and walk along with us. This would also help her learn to walk. Cost: $489.


We're just throwing this out there in case anyone feels led to donate. We would be forever grateful for any and all donations to help get our little girl the equipment she needs to make her life a little easier. If you would like you can just click the donate button below. Also, feel free to share the link!

Thank you for taking the time to read and consider!

Answered Prayers

I wanted to share what God has done for us this week.

The beginning of the week didn't start off too well. For starters Leila has had pretty bad separation anxiety since she started preschool. To the point that she has thrown up almost every time I have left her. It's been hard. Last Thursday she lost it all over me and the car before she even made it inside.

Also, Brian is a Federal employee. The government is shut down and there's no telling when it will reopen...The same day of the government shutdown we found out that TEIS would not cover a very expensive piece of equipment that Leila needs. So, we tried not to stress and just started praying for the Lord to provide.

I started trying to figure out what our options were. I had heard about UCP in Nashville from a couple people so I decided to give them a call. They have an equipment exchange program. From what I was told it sounded like they probably wouldn't have exactly what we needed but would probably have something that might work.

 So, yesterday I dropped Leila off in Murfreesboro at school and  for the first time she didn't cry when the teacher took her from me. First prayer answered! I was already excited from that and Logan and I drove on to Nashville. The lady at UCP showed me the equipment she had put on hold for us and I was about to send a text to Leila's therapist to see if it might work when I spotted the EXACT piece of equipment we needed. She also insisted that we try a stroller they had. So here I am with around $8000 (yes you read that right) worth of equipment in my car to use with Leila that I got completely free and we can use it for as long as she needs it!

To say I had an AMAZING day is an understatement. God answered two big requests all within about an hour and a half.

God answers prayer and he will always provide for His children. It may not always be the way we think it will happen or how we think it should happen but it will happen in His perfect timing.

Trust in the Lord with all thine heart and lean not unto thine own understanding. In all thy ways acknowledge Him and He shall direct thy paths.

Happy 18 months Logan and Leila!

Tomorrow marks 18 months since the best and worst day of our lives. The babies have come so far and we are so very proud of the both of them!

Logan is our little comedian who thinks he's the boss of the house.

Leila is our little princess. Just a sweetheart who will cry if her brother gets in trouble.

Leila is very much a Momma's girl (which is ok by me). We know she needs a little separation from me so we've been trying to leave her in the church nursery during service and Sunday School which she has done fairly well with. We've also been trying for a little bit now to get her into a preschool program in Murfreesboro. It wasn't without some pushing but we were finally able start this week. The hours are kind of like a Mother's Day Out but although she is behind where she should be developmentally because of her CP, at this center she is in a class with her peers. Her teacher is WONDERFUL. They get the benefit of reading the notes that her PT and OT make each week so they can work on some of those things there as well. It's such a blessing to be able to take her and we're very excited to have this opportunity!

Today was her first day and I discovered something. Although I've worked in childcare before and I know what it's like to be on the teacher side of pulling a kid away from their parent, I had no clue what being on the parent side would be like. I'm not going to lie, I balled. Did I mention how awesome her teacher is?! Knowing the state I was in having to leave her there she texted me pictures so I could see she was ok. When I picked her up her teacher told me she did cry some but it was a good first day so that was encouraging.

Logan could attend as well but we have decided not to send him. We decided it would be good for him and I to get to spend some time, just the two of us while Leila is at preschool. Today we went in Hobby Lobby and I let him get down and walk himself. He thought that was great! He started trying to run from me and thought it was just hilarious! We then went to Target and he got to play with the toys there. He threw a good little fit when I made him leave :(. His favorite toy he found was two little shopping carts. He wanted to push them all over the store.

Overall, today was a good day and I can't imagine life without these two blessings (no matter how hard their grand entry into this world was!). What a journey it's been but HAPPY 18 MONTHS LOGAN AND LEILA! We can't believe it's already been 18 months!

This is how I had to leave Leila today. See why it was so hard?!

Logan's favorite toys in Target today. 

talking on the "phone" (remote control )

Leila sitting up all by herself!!!!

See the pony in the corner? Well, since we got those at their birthday party, Logan tries to ride us all :)

Crazy hair!

He won't ride in the seat. This is how he likes to ride in the buggy so he can play with everything we put in there :)

One Year Anniversary

Today is our one year anniversary of bringing both our babies home! One year ago today Brian and I had no idea what we were in for. We were running around the Ronald McDonald House like chickens with our heads cut off trying to gather all our stuff that we had accumulated over the four months of living there because we were FINALLY given the news that we could take our precious babies HOME! Logan had already been with us at the house for two weeks but they were letting Leila go as well! We were so excited but also scared at the thought of being all on our own to take care of two babies, one having to go home on oxygen and meds. 

This year has flown by! Can time just slow down a little? Looking back I can't believe it's already been a year! They've grown so much and have come so far!

We had their 15 month checkups a couple weeks ago. They are both finally on the growth charts for their adjusted age! Leila weighed 16.4 lbs and 28.5 in long. Logan weighed 18 lbs and 29 in long. We were given the ok to come off of formula and start on whole milk. My babies are growing up :)

Here's a quick look back...

The day Logan got to go home!

Daddy with both babies then...

and now!

Then...

This was in March. Now their feet hang out!

6 month pic

9 month pic

12 month pic

Moving Along

What a crazy month it's been! We decided it was time for us to leave Tullahoma behind and find a house that is a little bigger for our family that is now a little bigger. We also wanted to be a little closer to our families. We got an offer on our house after just 9 days of being on the market! Moving is hard anyway, but as you can imagine it feels almost impossible trying to do it with two babies. We close on our new home this week and we can't wait to get settled again!

In the midst of the chaos Logan has decided he is ready to start walking. He took his first steps not long ago. Thankfully it was in front of Brian and I both. We both wanted to see that and we got to. What a fun moment!

He's also getting to be a little booger :). He has started smacking the spoon away when I try to feed him and he throws fits when I try to change him. He now knows how to tell you he wants more food by waving his hand towards himself and/or saying num num. He knows what num num is! That boy will eat till he makes himself sick!

Leila is doing wonderfully! She thrilled her therapists this week by crawling on her own alternating her arms legs just like she should. She's my mini-me and my constant little sidekick and I wouldn't have it any other way! She continues to amaze us!

They had their first experience in a swimming pool yesterday. The water was cold and it didn't go well...Oh well, it was a fun first anyways.

We can't have a blog post without some pics and videos so here ya go :)

The basket was laying on the chair and Logan decided to pull it down. This was the result...Mean Momma
 found it funny and took pictures before helping him get out :)

My mini-me!

                                                        He likes to rearrange furniture :)

                                                       and randomly play peek-a-boo!

First time going swimming!

                                                            Such a contagious laugh!

                                                        Walking! Here's a few steps...

Never Lose Hope

Romans 5:3-4

New International Version (NIV)

³ Not only so, but we^[a] also glory in our sufferings, because we know that suffering produces perseverance;⁴ perseverance, character; and character, hope.

I saw this verse on another parent's page and it really spoke to me. It really makes me think of my Leila and everything she's had to endure. It makes me think of everything we've had to endure as a family over the past year. Being honest, sometimes it's been hard to keep faith but we've tried. We still believe God has a purpose in everything and maybe one day we will know what that purpose is. This verse has really stuck with me. It's becoming one of my life verses.

Good news from Leila's therapists! When we first started they recommended Leila getting therapy twice a week once we were able to get her into a place closer to home (we're driving an hour for therapy right now but it's soo worth it! We love her OT and PT!). They said this week she is making progress so quickly that once a week is fine. They can't believe she's only had 6 weeks of therapy because she's already so different than when we started. I am more than proud of my little girl!

Sickness season is almost OVER! Finally! The twins had their last RSV shot last week. The season is over at the end of this month and then we can finally start getting the babies out of the house more and around other people. They need it too. I love them more than life itself but they are both getting pretty clingy. Leila has always been really bad about it but Logan is starting too. It will be really good for them to be around others.

We are also LOVING the pretty weather. We've gotten to go to the park and walk a couple times and got out in the back yard to play yesterday morning. Logan doesn't quite know about the grass yet :).

Today was Brian's birthday. We had a little celebration with a  "Happy Birthday" banner, homemade salsa, fajitas, and chocolate mint cupcakes. One more year to the big 30...I can't tease him too much about it though because I'm only a few months behind him and I think it's getting to me more than him...It just doesn't feel right...

and mine!

If you Look closely you can see my first tooth!

Pulling out all the wipes!

Daddy teaching us how to play the "drums"!

Fun in the sun!

First time playing with a leaf.

I'm too sexy for my diaper!

Not happy after her shot :(

Changing the tv channel.

After two hours of therapy she is wiped out!

Easter

Mark 16:1-6
When the Sabbath was over, Mary Magdalene, Mary the mother of James, and Salome bought spices so that they might go to anoint Jesus' body. Very early on the first day of the week, just after sunrise, they were on their way to the tomb and they asked each other, "Who will roll the stone away from the entrance of the tomb?"

But when they looked up, they saw that the stone, which was very large, had been rolled away. As they entered the tomb, they saw a young man dressed in a white robe sitting on the right side, and they were alarmed.

"Don't be alarmed," he said. "You are looking for Jesus the Nazarene, who was crucified. He has risen! He is not here. 

Easter is a fun holiday but let's never forget the real reason. HE HAS RISEN!

I keep trying to say this is the twins' first Easter. It's not. Last year was their first. Last year at Easter the twins were just a few weeks old. They were both in incubators fighting for their lives. Leila was so sick. We really couldn't think of anything else but those babies and were just trying to get through each day minute by minute. I guess that's why I keep trying to say this is their first.

I'm not sure if we'll do the whole Easter Bunny thing or not but we did go get a picture with him this year for the fun of it. The best picture we could get is below. This pic was taken right before Leila started screaming her lungs out at him :)

Today, the first Easter we could celebrate as a family of four, was a good day. The babies received their first Easter baskets with lots of goodies including some candy to try. My parents were able to come out and have Easter dinner with us. 

Logan went to the store with me Saturday night. He kept his ears on the whole time :)

I kept trying to get a pic of Leila with her goodies but
she was too focused on getting into it...

My bunnies :)

She LOVED her sucker!

Playing with Mama

Holding herself up! Yay!

My big girl!