Just keep going.

So, this whole “being a parent” thing is not for the faint hearted.  I have understood that more in the past 3 months than I ever expected to.  When it comes to our kids there’s no cowering or hiding or holding back. It’s full steam ahead, fight for their hearts, teaching, loving, listening, learning, redoing, coping & a then occasionally sleeping.

Ollie was finally able to get his body cast off after 8 loooong weeks. Drew was out of town for the actually unveiling so my parents came with and my mom held Lollie and played with her while my dad and I took turns holding Ollie while they cut the cast off. He hated getting it off but once it was finally off and he felt me rubbing his skin he felt much better about it.

As unprepared as I felt going into the 8 weeks I am very impressed with how we managed as a family.  Ollie kept his happy disposition and almost never complained about his limitations.  Laurelei was generous and sweet when he wanted her toys or just her company and poor Drew slept on the couch for 8 weeks while Ollie slept in our bed with me. We found our groove and now I am happy to say that we are on our way back to “normal”.

We were surprised at how little pain he felt after getting the cast off but as time has passed he is still unsteady and unable to walk on his own. His doctor explained how the next few weeks were going to go and what to expect and that he had been referred for optional physical therapy if he hadn’t started walking on his own.  I was so looking forward to getting the cast off that I didn’t take a lot of time to consider the transition his body would have to go thru after the fact.  His muscles have atrophied and his range of motion is still limited so we decided to go ahead and see a physical therapist.  He watched Lollie during her physical therapy sessions and we always called it her “exercises” so he was excited when I told him it was his turn.

We pulled into children’s hospital and he recognized it immediately and said frantically,  “this is not my exercises! This is the bone doctor!” I reassured him that we were only there for PT and we weren’t even going to see a doctor… Instant relief from the backseat.

His physical therapist was so friendly and sweet and made him feel comfortable and confident.  Within minutes he was up with the walker doing a little lap.

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I was so proud of him! We were able to bring the walker home with us so he can gain confidence and strength in his legs and hopefully be back to running around soon! We’ll have continue his follow up appts to make sure his broken leg doesn’t outgrow the other leg since there was so much new bone growth but they’re confident it will all even out as he grows.

I see that picture of him using the walker and it reminds me of Laurelei using her walker to learn to walk also. Kind of crazy seeing both of my kids use the same tool to learn how to walk within the same year! She has come so far with her hypotonia and you wouldn’t even know it was issue watching her run and play.  There are a few things she still needs help with but we’ve been lucky to be able to distinguish what is a muscle issue and what is the fear of what she may not be able to see.

We had an appt with her ophthalmologist yesterday down at children’s hospital and after her last appt (the one where she looked at me in the waiting room and said “no eyes. No good girl.” And then closed her eyes and cried the whole time) I was not optimistic that her doctor would be able to measure her drift.  It was an early morning appt so we left while it was still dark out with my purse stuffed with raspberries, donut holes, fruit snacks, chocolate milk, my iPad, and her stuffed kitty..I was ready for battle.

I prayed hard that she would cooperate and keep her eyes open and let him measure her drift so that we could move forward with her treatment and she did! I was so proud of her and so we are finally able to go ahead with her surgery.  Without proper and accurate measurements there is a risk of over-correcting during surgery so her doctor was patient and waited for accurate results.  She will still need glasses after the surgery and continued treatment and more potential surgeries as she gets older but this first surgery will rewind all the work her brain has done to “turn her vision off” essentially.  And while the idea of my baby girl having surgery on both of her beautiful eyes makes my heart fall down into my stomach I just have to go to that place that all parents have gone so many times, that we all hate, of “I’m doing this because I love you and because it’s what you need..but I hate it and I know it’s awful and I would do anything to switch places”.

We’re just waiting to get her scheduled now and hoping to have it all done before this new little baby comes into the family, so before the end of the year.

It’s crazy to think that she’s had these glasses for a year already! She was barely 1yr old and so stinkin’ cute..

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We would definitely appreciate your prayers during this time. Prayers for Ollie regaining his strength and mobility, prayers for the right timing for Lollie’s surgery and that it would go smoothly and she would recover quickly and without too much pain and prayers for the little one that’s going to be joining this circus in a few short months. And also prayers for this mama, having to help Ollie walk and move and carrying him has been a little hard as my belly grows and processing all aspects of their issues doesn’t get any easier when you’re a crazy pregnant person who cries at sentimental moments during a laundry commercial. I’m definitely surviving on lots and lots of time with my Heavenly Father, constant support from my incredible family, crazy amazing friends who drop anything to get together and eat dessert while we laugh/cry, and bucket loads of honey crisp apples….

Oh, and snuggles from these two three…

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I just have to keep reminding myself of all the blessings and even when that doesn’t work I just tell myself, “just keep going. You may not know where you’re going but you know who is leading you..and that’s enough.”

Love,

Jen

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