I know it has been some time since my last post, but it is safe to say life has taken us for some crazy turns lately. I'll first start with some updates on Jacob, our main man. Since the start of the fall season we have been on a bit of a rollercoaster with Jacob's respiratory functions. All summer he was free and clear from junky airways and nebulizer treatments. Unfortunately with the change of seasons, cold and flu bugs going around, and your usual allergens, there is not a day that usually goes by that we do not have to administer one or more treatments to clear up Jacob's airways. Over the past month we had two close calls which we thought were going to land us back at the haunting ER with a PICU stay. Fortunately this year we have an on-call nurse through the hospice center who can make it out to assess Jacob and treat him from home so we can avoid those stays. Typically during the winter months children with neuro and spasticity issues tend to have a harder time controlling their airways along with their body temperature. To know it is only the start of November and we have already seen two instances of this, it makes us just a bit nervous.
Aside from these two episodes, things have been pretty good with Jacob. Our two nurses that watch him during the day have been wonderful and are amazing with him. It is comforting to know that when we are at work and away from our son, he is in the best care. Jacob also received a new set of wheels! It took almost 9 months along with many phone calls and paperwork to get this accomplished. He seems content and less spastic when he is in his new wheelchair and can spend more time in this one than the one we had on loan. What is really neat about the chair is that you can adjust the height of it. So if we are sitting on the floor playing a game with Dominic, we can lower Jacob to our level so he can interact with us. Or if we are at the table eating dinner, we can adjust his chair to be able to push him up to the table with us. It is amazing to see what a difference a new wheelchair can make when it comes to not only Jacob's comfort level but also his interactions with us.
We are also in the process of ordering Jacob a new stander. The current stander we have on loan is wooden, bulky, and pretty barbaric looking. I believe I posted a picture in one of my other posts, but it basically looks like we have Jacob strapped in to a back board. Although he loves his quality time standing up like a big boy and seeing the world in a different view, it can be difficult for one person to put him in and out of it. The process behind getting him just put in the stander is a work out within itself, let alone not the safest for either person involved. We took Jacob last week to test try a few standers and he was a lot less restricted and much more at ease in the newer ones. Since it took about 9 months to get Jacob's wheelchair, we shall see how quick the turn around is for his stander. I won't hold my breath.
Jacob had his first appointment with his new physiatrist yesterday, as his former physiatrist took a job down in Oklahoma. We'll just say the personality of the two are well, different, but hopefully he will receive the same level of care. The physiatrist noted that he feels it is a good idea to keep up with the Botox for Jacob and he definitely notes the spasticity, especially in his lower extremities. He also noted that Jacob was on a surprising dose of medications for his age. Although this may be the case, he still manages to have a higher level of tone and arching throughout the day. Even though on paper it may look like a lot for Jacob, it is the one thing that has consistently been able to keep him calm and comfortable. He also sent Jacob off to get x-rays of his hip. He noted that kids who are quadriplegic usually end of having hip issues sooner than later that will lead them to multiple surgeries. He wanted to gather a baseline for Jacob's hips yesterday to keep an eye on them and to hopefully do as many preventative measures as possible to keep Jacob from running into problems. All-in-all, we are glad that this physiatrist is on the same pace with our previous one when it comes to the concern for Jacob's needs.
Over the course of these past couple months, we have gone through our usual other rounds of appointments, meetings, and check-ins. Jacob has still been going to aquatic therapy once a week. As always, this is his most favorite time of the week. There has not been much progression with the therapy, but the one major thing therapy is doing is keeping him relaxed and stretched out. We have also had several visits from the hospice nurse, hospice social worker, county therapists, and homecare managers. These have all been updates to see how Jacob has been doing overall and noting any changes in his health. It has been a lot harder to juggle all of these appointments now being back at work. I have had plenty of instances where I come home from work and get settled in with the kids and then hear the doorbell ring. Then for the next hour or so we find ourselves meeting with nurses, social workers, county workers, and therapists. By no means am I complaining because we are very appreciative of all the help and support we receive from each of these avenues. I just never realized how it is almost like a part time job trying to manage everything when it relates to a special needs child.
Besides all of the updates on Jacob, I wanted to make mention of a couple of things that we have noticed over the course of the past few months. It seems as if Jacob has really found his voice. We feel that Jacob does know who we are as his parents, but he really knows his big brother. It has been so heartwarming to see how Jacob lights up when he hears Dominic's voice or sees him entering the room. He braces himself with smiles and laughter waiting for Dominic to come play with him. If Jacob is ever sitting in his chair and notices Dominic, he begins to try to "talk" to him. Jacob could be silent for the longest time, and then he sees his brother, and he will not stop "talking" until he gets Dominic to come over by him. It is hard to explain, but when you see it, it is a pretty amazing thing. Jacob has also finally noticed our 100 pound lab, Diesel. Up to this point Diesel would walk in front of him or even lick him, and Jacob would not acknowledge him. Over the past month or two Jacob is able to track him with his eyes and giggles when Diesel runs past him. Any little development is progress to me.
On to some family notes. To make life even crazier we decided to add some big changes to the mix. First, we are in the midst of moving. We did not have any intentions of selling our house so soon, but we could not pass up the opportunity. Shawn and I have discussed the possibility of finding a home or building one that would be more adaptive for Jacob. As Jacob gets bigger, it is going to be harder to constantly take him up and down the stairs to his bedroom and bathroom, along with wheeling his equipment around our house with our current floor plan. Shawn decided to call the realtor to see what price they would list our home at. Low and behold, we had an interested buyer who made an offer before we even listed the home. And better yet, they are allowing us to rent there home that is only a mile down the road. We have been going crazy packing, making plenty of phone calls, updating with address changes, and filling out the endless piles of paperwork. The next step is figuring out where we are going to permanently live and doing all of this madness all over again.
The next big change is Dominic and Jacob are going to be big brothers! Shawn and I always discussed having three children. With everything that had gone on with Jacob, we were not sure if that would ever be a possibility. To be honest, we do not know what the future holds for Jacob. To see the love that Dominic and Jacob have for each other and how they interact just melts my heart. Being told that Jacob's lifespan will be dramatically shorter is a hard pill to swallow. What is even harder is knowing that Dominic's only sibling could be taken from him way too soon. We are beyond excited and blessed to be able to welcome another baby boy into our family in February. I am 24 weeks along and have been doing pretty well so far. They are taking extra precautions with this pregnancy and I have had doctor visits every 2 weeks with ultrasounds every 4 weeks. Up to this point, everything has looked good. We are keeping positive thoughts and prayers for a happy and healthy pregnancy and baby.
With all of that being said, I think it may be understood now why I have neglected the blog for some time. I will be sure to keep updated sooner than later this time!
