March 19, 2014

UPDATE (3/19/14)
Life is so busy these days. It seems as though the days are flying by, which is a nice change compared to a year ago when the days seemed to drag on so slowly, but I hate that my baby boy is growing up so quickly. Jonny loves it. He can’t wait to for the two of them to throw a ball out back in the yard. Beckett is developing his own personality and he is so silly. It truly is amazing to watch him learn and explore the new world he gets to be a part of. He is fascinated by the smallest of things, such as looking out the window, seeing himself in the mirror, or watching the cat walk by. He is just such a happy boy, loves life, and is smiling constantly. I know this update is long overdue; so much has probably changed since we last posted, and I will do my best to give as many details as I can remember. Here goes nothing.
To begin, Beckett continues to do well overall. He did have an ear infection and sinus infection back in January, but it was nothing an antibiotic and some breathing treatments couldn’t fix. Otherwise he continues to get bigger and stronger. We have both a cardiology and GI appointment in two weeks, so we will get a more accurate picture of his progress and potential future plans after those. At the cardiology appointment he will have an EKG, chest x-ray, and an echo. He has an EKG every time he goes, which have always been normal, but he has not had an x-ray or echo in about five –six months, so we pray everything still looks good. The echo will tell us exactly how his heart function is. That will be the first step to telling us when he might have his completion surgery. It is only one piece of the puzzle but will give great insight into how well Beckett is really doing. At each appointment thus far they’ve said he’s doing great, but this will be the true test. We basically just don’t want any decrease in function. Anything else will be great! For GI, we are still trying to get his vomiting under control. Some days are definitely better that others, but he has not outgrown his reflux yet. He handles it so well, but I can only imagine how frustrating it must be to throw up numerous times a day.
Beckett also has speech regularly at Riley now and we have come so far from when we first started. Beckett will open his mouth for a bite, he will put his own spoon in his mouth, he will sometimes put a cheeto in his mouth and then bite off a small part, and he is actually getting a little better at swallowing a bite here and there rather than letting it all drip back out his mouth. We practice eating twice a day and most days it goes pretty well. Honestly, getting through a meal without puking is a huge success. But we are so happy with any progress. The fact that he even lets us put the spoon in his mouth is a huge step. His biggest struggle is figuring out how to swallow once the food is in there, and is something you can be praying for. One day we know it will go off like a light bulb, just like everything else he has learned. Patience is hard, and after last year you would think we would have it down, but each day we have to make a conscious choice to be patient, relish in the progress Beckett has made, and trust God will continue to bring him full circle.
Beckett has learned so many new things in the last couple months. It is almost as if he picks up something new every day. He is so eager to learn, and loves to be cheered for when he does something right. He is definitely an attention hog, but who can blame him when he had eight months of being loved on by everyone in the hospital. He can roll over, which was initially helping him get better at tummy time until he learned to do the splits and push up into sitting. We have a video, and maybe we can share it soon. However, doing the splits is not good for his hips and core strength so we work hard against it with therapy. He is now able to get up into sitting from the side with just a little help and it won’t be long before he can do it by himself. In fact, just yesterday he woke up from his nap and when I looked in the monitor to check on him he was sitting up in the crib. It was unbelievable. I know things like this seem so normal and no big deal, but when we have to work so hard to teach him because he missed all the natural development, they are actually huge milestones. In fact, I was just talking with my mom the other day about how with the next child we won’t actually have to “teach” all these things because babies just do it. Crazy! It is so strange to think about because that has not been our reality. We are so proud of him, and his therapists are too! He can also stand with support, he is getting oh so close to crawling, he snaps (see video on media page), makes new noises with his mouth, tries to say new words, and my personal favorite…he just learned last week to give kisses! Oh how it warms my heart to have my son love me back! I almost forgot! He is so mobile. No he cannot crawl, but he scoots, or what they call bottom hitches, and boy can he move fast. He is all over the place. It is so funny to watch, yet another video we will need to post, but it is so good for him to be able to move through and explore his environment. His poor legs though. He has big, red rug burns up the sides of both calves from scooting across the carpet. The good thing is I don’t think it bothers him because he just keeps on going. He is learning so much with how to put things in a container and take them out, stacking and nesting cups, and he just learned to pincher grasp puzzle pieces last week. He also today started signing “all done”. It is amazing how quickly he picks things up. We normally only show him once or twice and he’s got it. I just love watching him learn. And, it is another reminder of God’s protection over him, especially when last year they told us he might have brain damage. I can tell you one thing I sure don’t see any! Praise the Lord!
His therapy continues to go well, but we just lost his OT due to resignation. That is huge because he was getting it every week and making huge strides. We are looking into getting into a clinic, which isn’t as convenient as them coming to the home, but is better than nothing. We are looking at the same for speech therapy because the at home waiting list is so long. Beckett needs these services and we are willing to do what it takes to provide them for him, it is just a long process. He does however get physical therapy and developmental therapy in home and both are going great. Beckett responds so well to both of them, and their knowledge on how we can help him throughout the week is priceless. We are so grateful for them!
Beckett also made his first big road trip last month. My parents, Beckett and I made the four-hour trip to Flint, MI to visit my dad’s family. We were only gone for about 24 hours, but it was such a good trip. My grandma and my great aunt had never met Beckett, so that was truly special, and my dad’s sister had not seen him since he was about two weeks old. It was so great to be able to just spend time with them and see them playing with Beckett. He did awesome the whole time, but especially in the car. He played most of the way there, and slept the entire way home. Not a single cry in the car. He is such a good boy. He is so content to just play with his toys. It was a little insane how much stuff I had to pack for a one-day trip. It doesn’t seem like much when we are here at home and everything is put in its place, but when you load it all up in one big bag it is nuts. I can’t even begin to explain what it looked like when my parents arrived to pick us up. Needless to say, my aunt made fun of me and said, “you know it’s only one day right?” Oh the life of traveling with a special needs child.
So, those seem to be the highlights of what we continue to work on and need prayer for. On the flip side, we have some huge praises as well. Nearly an entire year later, we are finally getting our roof fixed! Hallelujah! After multiple other occasions of it leaking this winter due to so much snow, and further damage to the inside ceiling, we have found someone to fix it. We know many of you have been praying for that and we are so thankful!
Also, when things get rough, God uses someone else to provide a need for us. Whether through a friend who continues to raise money in a jar at work or an anonymous gift from whom we will never know, it could not have come at a better time. You know who you are, and we want to say thank you from the bottom of our hearts. Though Beckett’s condition may be stable right now, the impact of his journey has not necessarily gotten any easier. So thank you to those who continue to pray, to those who continue to give, to those who continue to write or call, and to those who have not forgotten us. We appreciate you more than you will ever know.
Another huge praise is we finally have respite nursing in place. We get 40 hours a month to use however we choose to have a nurse come to our house and watch Beckett. This allows us to go grocery shopping, get coffee, go out to dinner, watch a movie, take a nap, get homework done, or anything else we may want to do. Basically it gives us time to breathe. Don’t get me wrong, I love being home with Beckett and finally being able to take care of him rather than sitting helplessly while someone else does it, but it is very tiring. We are still getting up multiple times through the night to give meds, as well as all day long, plus all the other things we have to do for his care on top of just normal things of raising a baby. So getting some time away is a much-needed blessing. More importantly than having a nurse come, is having a nurse come that fits well. We really like her and so does Beckett, and she likes him a lot as well. She has an eight month old so she is right in the middle of the baby stage too. It is just comforting to know we can leave the house and Beckett is in good hands. I am sure all you parents out there know how nerve-racking it is to leave your child with someone, but multiply that times one thousand when your child has very specific medical needs. Anyway, she is great and we are so lucky to have her.
One final thing, one of Beckett’s primary nurses from St. Vincent, Jamie, had a beautiful baby boy a couple weeks ago. His name is Barrett, and we want to say congratulations! While I am glad we are not living our life in a hospital every day, the people at both St. Vincent and Riley are our family and we miss them. So, we are so happy for you Jamie and we can’t wait to meet him. Another of his primary nurses, Kendall, is not far behind, and we can’t wait for the birth of your sweet baby boy either.
Life is a complete 180 from a year ago, and we have definitely settled in to a daily routine. There are many doctor’s appointments, therapy visits, and medications, but we get to enjoy normal things as well. I load Beckett up and take him out to the store, or flea markets, or restaurants, or wherever sounds fun, and he just goes along for the ride. Like I said, a happy, happy baby. We are so blessed to be in the next phase of this journey and we continue to soak it all in. Before we know it, this will all be a distant memory (we aren’t quite there yet ) and I want to savor it all. So again, thank you for all your continued support. Beckett is a miracle; there is no doubt about it. To God be the glory. Forever and ever. Amen.

— with Jonathan Rupp.

5 thoughts on “March 19, 2014

  1. Jerriene Woodrow says:

    Thank you for the update, I share the update with my church family and they all know Beckett’s name AND the prayers for Beckett and his family continue. God bless you.

  2. Doris Wallace says:

    Thanks for the update and wonderful trip you took us on through Beckett’s journey. I feel privileged just to live next door to him, even though I have never actually seen him up close and personal except thru a screen door! I have always been terrified that I might take a germ inside and that it might impact him. When the weather gets nice, you (1 – 2 or 3 of you) are invited to come over and sit on my front porch swing. Think he would like that? If Spring ever comes, that is. Besides my 7lb Yorkie dog, I have a fish pond out back he might find interesting. Thanks for sharing… Doris Wallace

  3. child of God says:

    Praising Father that Beckett is doing so well!! Thank you for the update it is so wonderful to hear how God is working in your family.


  4. Stephanie Miller says:

    Thanks for the update! Glad that Beckett is doing great!!! I actually live in Flint, Michigan, lol!

  5. Sharon-Crigger-Stokan says:

    Thanks so much for this update, Leah. It was so good to read of Beckett’s progress and to read of God’s continued touch on his life. He is such a sweet little boy and it is just so obvious that God had great things in store for him. Your family continues to be in my thoughts and prayers daily – multiple times daily – and the details in the update help me to know better how to pray specifically. May God continue to bless and uphold your precious family.

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