So Very much
In support of
Oliver Baluch
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Oliver Baluch
1. We got the G-tube! Finally placed September 3rd, he finally gained enough weight to get the tube placed!Β
π **Oliver Update** π
I wanted to give everyone an update on everything that has been going on with Oliver lately. Itβs been a lot, so Iβm going to break it down into bullet points:
β’ **EEG:** Oliver had an EEG done on Monday, September 28th, and unfortunately, it showed that his **hypsarrhythmia is back.** Hypsarrhythmia is a very abnormal brain-wave pattern that can happen with infantile spasms and means his brain is showing a lot of disorganized electrical activity.
β’ The EEG also showed that although Oliver appeared to be sleeping, he **wasn't showing sleep spindles**, which are normal brain-wave patterns we expect to see during certain stages of sleep. His neurologist was out of the office all last week, so we haven't been able to discuss the results with him yet. We have a virtual appointment scheduled with his neurologist this Friday, so we're hoping to get some answers and a plan moving forward.
β’ **Medication and development:** After talking with his PT and nurse case manager, we're becoming increasingly concerned that the anti-seizure medication Oliver is currently taking to control his infantile spasms is making him extremely drowsy and causing very low muscle tone. We're concerned that this is contributing to him **regressing in his gross motor skills.** I have a video from March where Oliver was sitting mostly independently, and now he is nowhere remotely close to being able to do that. We believe the medication may be playing a significant role in this regression.
β’ We're hoping to **trial Epidiolex** and potentially use it to replace his current anti-seizure medication, depending on what his neurologist thinks. We'll be discussing this with his neurologist on Friday.
β’ **G-tube:** Sunday night after Fall Fun Fest, I accidentally pulled Oliver's G-tube out while getting him out of his stroller. π We had to take him to the hospital, and thankfully they were able to get it back in. Unfortunately, it had been out for about 4 hours, so they had to manually dilate the opening before they could replace it. It was definitely a stressful night, but thankfully his tube is back where it needs to be.
β’ **CHOP:** In December, we're going to **Children's Hospital of Philadelphia (CHOP)** for a second opinion regarding Oliver's brain development and infantile spasms. We're really hoping to get some additional insight and make sure we're doing everything we can for him.
β’ **Therapy:** Oliver will also be doing a **5-day intensive therapy session after Christmas.** Normally his Dynamic Movement Intervention (DMI) therapy is spread out over time, but this will be a more intensive versionβ**1 hour a day for 5 consecutive days.** We're hoping the increased frequency will give him an extra push with his strength and motor development.
β’ **A little extra help:** We don't usually like asking for financial help, but with everything coming up, the expenses are starting to add up. Oliver's regular therapy is only partially covered by insurance, leaving us with a **$30 copay per session**, and he's currently going **2β3 times a week.** The December intensive will be 5 sessions in one week, along with the additional expenses of traveling to CHOP for his second opinion, including gas and potentially lodging.
β’ **Absolutely no pressure or expectation**, but for anyone who has asked how they can help or would like to contribute toward Oliver's therapy and upcoming travel... Even sharing the page, keeping Oliver in your thoughts/prayers, or simply following along with his journey means more to us than I can put into words. π
We're just trying to take everything one step at a time and do whatever we can to give Oliver the best chance at making progress. Thank you to everyone who continues to check on him, love him, pray for him, and support our family through all of this. It truly means everything to us. π
π **Oliver Update** π
I wanted to give everyone an update on everything that has been going on with Oliver lately. Itβs been a lot, so Iβm going to break it down into bullet points:
β’ **EEG:** Oliver had an EEG done on Monday, September 28th, and unfortunately, it showed that his **hypsarrhythmia is back.** Hypsarrhythmia is a very abnormal brain-wave pattern that can happen with infantile spasms and means his brain is showing a lot of disorganized electrical activity.
β’ The EEG also showed that although Oliver appeared to be sleeping, he **wasn't showing sleep spindles**, which are normal brain-wave patterns we expect to see during certain stages of sleep. His neurologist was out of the office all last week, so we haven't been able to discuss the results with him yet. We have a virtual appointment scheduled with his neurologist this Friday, so we're hoping to get some answers and a plan moving forward.
β’ **Medication and development:** After talking with his PT and nurse case manager, we're becoming increasingly concerned that the anti-seizure medication Oliver is currently taking to control his infantile spasms is making him extremely drowsy and causing very low muscle tone. We're concerned that this is contributing to him **regressing in his gross motor skills.** I have a video from March where Oliver was sitting mostly independently, and now he is nowhere remotely close to being able to do that. We believe the medication may be playing a significant role in this regression.
β’ We're hoping to **trial Epidiolex** and potentially use it to replace his current anti-seizure medication, depending on what his neurologist thinks. We'll be discussing this with his neurologist on Friday.
β’ **G-tube:** Sunday night after Fall Fun Fest, I accidentally pulled Oliver's G-tube out while getting him out of his stroller. π We had to take him to the hospital, and thankfully they were able to get it back in. Unfortunately, it had been out for about 4 hours, so they had to manually dilate the opening before they could replace it. It was definitely a stressful night, but thankfully his tube is back where it needs to be.
β’ **CHOP:** In December, we're going to **Children's Hospital of Philadelphia (CHOP)** for a second opinion regarding Oliver's brain development and infantile spasms. We're really hoping to get some additional insight and make sure we're doing everything we can for him.
β’ **Therapy:** Oliver will also be doing a **5-day intensive therapy session after Christmas.** Normally his Dynamic Movement Intervention (DMI) therapy is spread out over time, but this will be a more intensive versionβ**1 hour a day for 5 consecutive days.** We're hoping the increased frequency will give him an extra push with his strength and motor development.
β’ **A little extra help:** We don't usually like asking for financial help, but with everything coming up, the expenses are starting to add up. Oliver's regular therapy is only partially covered by insurance, leaving us with a **$30 copay per session**, and he's currently going **2β3 times a week.** The December intensive will be 5 sessions in one week, along with the additional expenses of traveling to CHOP for his second opinion, including gas and potentially lodging.
β’ **Absolutely no pressure or expectation**, but for anyone who has asked how they can help or would like to contribute toward Oliver's therapy and upcoming travel... Even sharing the page, keeping Oliver in your thoughts/prayers, or simply following along with his journey means more to us than I can put into words. π
We're just trying to take everything one step at a time and do whatever we can to give Oliver the best chance at making progress. Thank you to everyone who continues to check on him, love him, pray for him, and support our family through all of this. It truly means everything to us. π
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Pabaluch 27 days ago