Sorry it has been awhile...thankfully we have had an uneventful length of time since I last updated. Know that it is really a good thing if I am not writing much, as this blog is a bit of an emotional outlet for me. Nothing to write-all is well.
Spring came and went with lightning speed. Elena enjoyed the end of her dance season with a spring recital. She even was front and center in one of the numbers which was very exciting for her in her first year of dance.
She also worked the concession stand this summer at my dad's basketball camp, something I did for many years, which was quite a full circle moment for me. I am very proud of how hard she worked and she had a great time living in the gym for 2 weeks. She also went to church camp for the first time. She did have one her closest friends with her, but it was hard for her to go away from home. She did so great though, and had a great week.
He played basketball at my dad's camp this year for the first time, which again was a point of nostalgia for me. Basketball camp was the highlight of my summer for so many years and I am so thankful he gets to enjoy it as well. He was one of the youngest kids but worked hard and improved a lot. He also went to church camp, and I was so proud of him. None of his friends could go, but he went anyways and made many new friends and had a blast.
It was Jacob's first year on the field. At 4, he was the youngest one out there, but he really wanted to play. He was so cute, and it was a fun season.
watching big brother
Jacob spent much of his baseball season like most 4 year olds would-playing in the dirt. He enjoyed it though (until he got hungry and/or hot), and it was so much fun watching him and David out there together as David coached his team. Our little guy turned into a pretty good hitter, and loved running the bases. Jacob was very happy when the season was over, because he got his first trophy. It was a great first year of ball for him, and we loved watching him have fun.
In August everyone went back to school. Jacob and Luke started at a new school, which we have been very happy with. He is in a 1/2 day kindergarten, which prepares kids to either go on to first grade, or enter regular kindergarten the next year, whichever the parents think they are ready for. We planned to send Jacob late, as we did with Asa and will also with Luke. With their summer birthdays, we feel its the best choice for them. We had hoped that doing this (for him) pre-kindergarten, that it would give him a leg up for next year. He has a small class (only 7 kids), a great curriculum and structure, and an enthusiastic and patient teacher. It has been a perfect fit, and he has learned and grown so much.
In July, Jacob had sudden onset of pain in his ankle, the one I have worried about since the beginning. The blue spot there (which many tried telling me was his saphenous vein, not realizing how well I know a saphenous vein when I see one), overnight was hard as a rock, and much larger than ever before. We were out of town at the time, and as this was a superficial lesion, I didn't feel emergent treatment was called for. A call to our physician team in Boston confirmed this, stating that he likely had thrown a micro clot in this lesion, and it would likely resolve itself soon. They could look at it via ultrasound and treat if necessary next time he was up there for treatment. They were correct, as in 2-3 days, it was back to its original size, softer, and not painful anymore. This little blip caused me concern though, as it demonstrated things happening with his condition, which we do not want to see. In addition, we have noticed growth of the lesion extending out of his chest and onto his back again. This is the biggest area of concern. We have no idea what the lesion is doing inside of his chest, but growth outside likely correlates with internal growth. Boston felt we were still immediately ok as he is having no pain, but likely moving towards needing treatment again to shrink this lesion. They want us to include imaging of his T-spine (the most dangerous area for growth to occur) when we MRI his brain this fall. If you recall, last October he had neuro symptoms that prompted us to get an MRI of his head. It revealed a lesion in his brain. We were to re-look at that 1 year later to try to establish a baseline. After talking to our physician team in Boston, we have scheduled an MRI of Jacob's brain and T-spine for November 15 here in Chattanooga. We will then send the imaging to Boston for their review and get their recommendation.
Perhaps the new imaging will show continued stability of the lesions, but I am feeling skeptical. That's maybe the wrong word-I am feeling resigned. I feel like we will be heading north with our boy this year, but I am thankful for the 2 years of good health he has had, and I hope that whatever treatments are necessary will buy him more years of good health.
On an unrelated note, there is another issue with Jacob that has raised concern. We often noticed over the past years that Jacob often does not hear what we say, but always felt that he didn't listen. He is often in his own little Jacob world, and tunes out everything else. We chalked it up to that. However, his pre-K teacher this year pulled me aside a couple weeks ago and mentioned that she did not think that Jacob could hear very well. She acknowledged that he could just not be listening, but said that he would often reply "Huh?" to things she said when he was paying attention. She recommended getting his hearing checked. He happened to have a regular checkup scheduled with his pediatrician that next week so I brought it up. He did a hearing screen on Jacob in the office, and Jacob failed both ears. He was then referred to an audiologist for further testing. His hearing checked out well with audiology, and he passed all three much more detailed tests run at the hospital. After working with him, however, the audiologist suspects a potential auditory processing disorder. This is where the ears receive the stimuli in a normal way, but the brain does not process it like it should. Or the brain does not receive the message as it can only process one message at a time (such as visual stimuli, or tactile stimuli). He is as of yet too young to definitively diagnose with this, as it could be related to his maturity level, but the audiologists strongly suspects that time will show that this is the issue. We do not think it is related to his BRBNS, but it is common with children who have had lots of anesthesia at a young age. e been a bit frustrated about it, as I feel like he has enough to deal with and now we have this to add on top. But I know that we need to be aware, and intervene if necessary to help him overcome any additional challenges. I know he can hear me, but perhaps all is not as it should be. I am thankful for his astute teacher for bringing her concerns to our attention. He will continue to be followed by audiology to assess his progression, and implement therapy as needed.
Please pray for us as we watch and wait on all of this. I've said before, I hate feeling like I'm waiting for something bad to happen; I want us to just live our lives out from under the shadow of his condition. But sometimes that shadow casts farther over me than I'd like to allow. Pray for all of our kids, as their awareness of anxiety on our part increases as they grow older. May we have the words and actions to convey peace to their hearts. Pray for Jacob. That he stays well, free of pain, and that the beautiful soul he has stays full of joy and little boy mischief. That he continues to have "today's miracle."
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