Change

I know its been a while since I have updated, and really it's due to the fact that I am...lazy. Well, in respect to blogging I have been down right lazy. Usually when I get a free moment the last thing I want to do is reflect on the moments prior... anyways... I can't believe how fast this summer is FLYING by! It really needs to STOP! Okay, well at least it needs to slow down a little.

This is a week full of changes! First off, Jackson's Hippotherapy was approved by insurance which is a HUGE deal! He already gets Physical Therapy through First Steps, and we were asking for a second Physical Therapy session per week in Hippotherapy and coverage on 2 PT sessions per week is almost unheard of the the insurance world. But we count each blessing and look at it as an opportunity to really focus on Jackson's gross motor skills and tune them up as much as possible before starting school in October. 

Second Big change... Jackson is now sleeping in a toddler bed! This has not been something that we  really considered because he is getting a "Sleep Safe" bed in August...but we wanted to give him the opportunity to show us that he could sleep in a "big boy" bed without any issues, and we will continue to watch for any unsafe behaviors. His crib is set up in the office for now, just in case we encounter falls, or midnight escapes. The first night went better than expected. No tears, no tantrums, he went right to sleep, and I even had to wake him the next morning for therapy. Then...get this...he took a nap! This kid rarely takes naps, but after getting a little cranky I took him to his room and asked if he wanted to nap in his big boy bed, and he shook his head yes. Again no complaining...just sleeping! Have I mentioned how blessed I am with this kid!?

First night in his new bed!

And finally... Jackson's new wheelchair is IN! But we don't actually HAVE it yet. The hospital called to tell us all of the parts had arrived, and we should hear something from them this week in regards to picking it up. This is also a HUGE deal for Jackson. His current chair has taught him how to maneuver and propel the chair very well, but it is a heavy wheelchair -weighing in at around 45 pounds- and it was not custom fitted for him. His new chair will be around 15 pounds, larger wheels, and fitted just for him with special cushions and frame adjustments. This all comes just in time for school. It's a time for a lot of changes in this little man's life, and he is accepting all of them with a great attitude. 

Patience

Since we have welcomed Jackson in to our lives we have also endured another thing that is sometimes hard to grasp...Patience. We "patiently" waited for Jackson to get bigger so he could come home, then we "patiently" waited for him to get off of his ventilator, then oxygen, then to get rid of his trach. Now we are "patiently" waiting on his new wheelchair. It has been 6 months since we started the ordering process..just about as long as he spent in the NICU. Is it really "patiently" waiting... if you have no choice?

I have thought a lot about this lately. How patient are we really when it comes down to actually waiting. Ok, I admit I am the most impatient person on the planet, but it has not always been that way. I was a laid back, easy going, nothing-could-go-wrong kind of girl. But then you have kids, and really when it comes to their best interest, it sometimes takes some "impatience" to get things done.

Long story short... after a quick phone call, his chair is now on RUSH Delivery!

Sorry just a short vent...

Almost Summer

I can hardly believe that Jack will start school in just a few months... that also means that he will be THREE! Three years old. Where does the time go?

We have been very busy lately with Jackson's therapies. With the summer coming, Jackson's therapy schedule will change to meet the therapists needs... It's good to switch things up, something as simple as the time of day he is seen by a therapist can made a world of difference. We started seeing his PT at 5:30pm on Mondays verses 10am, and he has been in much better spirits with her. Jackson has also been on a waiting list for nearly a year at Theraplay in Carmel for hippotherapy (horse therapy) and we finally have a perminante weekly spot on Fridays! It will consist of a half hour of work with a PT in a therapy room, and a half hour of work on a horse. I have heard nothing but great things about hippotherapy and I am so ready for him to start! We are waiting to hear from insurance as to weather or not it will be covered...most likely we will be paying out of pocket, so it may be limited to once or twice per month.

Some other big news... our house is going on the market in about 4 weeks. Yikes! Nick and I have decided it is time for more space. Our home has been perfect for us up to this point. Could we make it work in the long run? Sure. But the timing is right and we want to catch a good deal on a home while the rates are still good. We are planning on building a new home in Noblesville, but the lot's have yet to open up. Where will we go when our house sells? No Idea. We have the option of moving in with family, but who really wants to do that? We will probably get an apartment while the house is being built. We could stay in our home, but that would potentially stick us with two mortgages, and again who wants to do that?   Ideally we would like to sell our house, then immediately start the build on the new one. It takes about 4 months to build the new home and we could find an apartment on a month to month basis. I want to stress about it, but I know it will all work out in the end.

Summer is almost officially here...Que the HOT weather! 

Short Trip

Friday Jack, my mom, and myself decided to head to Ohio a day early to spend time with our family before a baby shower on Saturday. Packing for an overnight does not seem so bad anymore, considering all of the things we "used" to have to bring with us. There are just a few extras that MUST go, feeding pump and accessories, formula, backup g-tube and supplies. Jack's stuff finally fits in to a diaper bag!

The drive to Hillsboro, OH was fun! Jack and my mom rode in the back of the van. We danced to the Party Rock Anthem more times than I can count. After nearly 4 hours, a stop a Big Boy, and of course Starbucks- we made it. If you don't know Jack he is very much a socialite. He loves people, loves being around people, and loves flirting with the ladies! He gave more kisses in the past 24 hours than he has in his life! His cute little lips puckered up for anyone and everyone! We headed home Saturday evening and it was much more mellow in the car. Jack- the party king- wore him self out and slept the entire ride home. It was nice having time with my mom and Jack. I hope he grows up to love his mom as much as I do mine!

It was a short trip, but much needed. It helps to switch things up a bit and break our routine that can become very monotonous. 

Goal Setting

Today we had Jackson's annual IFSP meeting. Basically we looked at our therapy goals over the past year and checked off the ones he has met, and set new attainable goals for the next year. It's pretty straight forward, and we adapted some of his old goals that he partially met. This allows every care provider to be on the same page as far as Jackson's therapy and education. 

Speaking of education... we also found out today that Promise Road Elementary will have a Developmental Preschool Program! In February we met with the school board and they were unsure if this new elementary school would implement a program or not. It was approved by the board last week, which means Jackson will be attending school right at the front of our neighborhood! Before he would have gone to Stoney Creek Elementary, which is still less than 2 miles away but this school is new, and within walking distance. It adds a little bit of comfort knowing that I'm only 2 minutes door to door if he needs me. Jackson will start attending preschool after his third Birthday in October. I know he will absolutely love it, but it's a little bitter sweet for me.

The 'bump' on Jack's head has healed nicely, you can't even notice that it was there. This kid is resilient! Friday night I literally thought Jackson had pneumonia... he was coughing non-stop in the middle of a deep sleep. He had no other symptoms other than a cough. The Ped's office is obviously closed on nights and weekends, which seems to be when everything happens, so I went to the drugstore to find a remedy. Did you know they don't make cough medicine for children under 4? Well I didn't, but I do now. I bought honey elixir by "Little Remedies," and that was pointless. You have to drink it in order for it to be effective, guess I should have read the label a little better before I purchased it!(he uses the tube for his meds) By Sunday morning Jackson was back to his old self (of course) so we didn't need to make a trip to the doctor!

Jackson has been up to some new tricks lately. He has learned how to completely sit up on his own. Before he used the couch or coffee table to wedge his feet under and would sit up using his abdominal muscles. Now he can do it with no assistance of any sort (i.e. coffee table, couch, us holding his legs down, etc.) This is a huge milestone for him, and something that we have been waiting FOREVER for him to do! Did you see how he climbs the stairs? I thought this was pretty innovative, bust also shocking when I found him that far up! He also learned (from daddy) how to blow bubbles in his milk using a straw... he thinks it's hilarious. Me, well not so much. I would rather him drink the milk. But I pick and choose my battles and had to take a video of it!
(sorry for the quality, it was dark and my camera was low on battery)

I'm a Real Boy!

Jackson was initiated in to the "I'm a Real Boy" club today. First we went to get him his first REAL haircut. His hair was slowly getting out of control, and it was time to surrender mommy's uneven trims and go to a professional. He did surprisingly well during the haircut, I held him in my lap and they trimmed, buzzed and sprayed away! It took all but five minutes, and he was on his way. Then we met Nick at Hamilton Town Center Mall and just walked around and enjoyed the day. Jack was in his wheelchair sporting his new aviator sunglasses, and he was getting lots of ooh's and aaah's. He looked pretty sharp with his new haircut and sunglasses I must admit!

Then... BOOM. 

Seemingly in slow motion Nick and I both saw Jackson fall out of his wheelchair. I unbuckled his seat belt as I was loading his things in to the van and when I turned back around he is mid-fall towards the concrete. We tried to catch him, but gravity had already taken over. Jackson instantly had an enormous goose egg on his forehead. Nick and I were both mortified with what had just happened. Jackson cried for maybe 30 seconds. We decided that we should take him to the ER just to get checked out. IU Health just built a new hospital in Noblesville, and we could see it from where we were parked so we headed that way. 

Once in the ER we were sent right back, and a doctor greeted us at our room. He looked at Jackson and didn't even need to ask why we were there! To be on the safe side the MD ordered a CT scan on Jackson's head. Everyone was very friendly, and we waited less than 20 minutes for the CT scan results to come back. We were in and out of the ER in an hour! (probably due to the fact that Jack was the only patient) Everything was fine, just a bump. Jackson didn't seemed like he was bothered by his new shiner and was very happy!

Jackson fell asleep on the way home (the whole 5 minute ride) and we let him sleep while we made dinner.  It was a good end to a great week. We didn't even get a picture of his haircut before he bumped his head, I will know for next time! I can't wait to see what kind of adventures Jack will lead me on next week!

Peace

I am writing this post for 2 reasons...

1. To remember exactly how I feel right now so I can come back when I am discouraged.

2. To share with everyone the power of prayer and what an amazing God we serve.


Every day I pray to God to give me peace. Before going to bed last night I felt unsettled. My heart was aching because of the unknown future for Jackson. Will he ever eat on his own? Will he talk? Will he walk? Will he be intelligent?  Will he ever be just a kid? Will he get married? These are the thoughts that plague my mind when the lights go down, and Jack is peacefully sleeping. Last night I prayed for peace...

There he was. Tall. Dark hair. Glasses. His face was long and had a very distinguished jaw line. He was wearing a suit and tie. His wedding band reflected off of the sun. His smile was breathtaking. He was happy. It was Jackson.

Those are the only words that I can pull from my dream last night. It was indescribable, but so real... God gave me Peace. he painted a picture that would give my heart rest. I truly believe that God works in mysterious ways, and this was no dream.