Jul 17th - Kyle has been making great progress in his mobility. He is now cruising along furniture with ease, transitioning among multiple surfaces (i.e. going from the couch to the band toy, back to the couch, onto the table, and even moving to the end table and the ottoman), and trying to pull up on everything - in his crib, toys, end tables, coffee table, etc. He is no longer crawling on his elbows or with one arm bent on the elbow, but is now able to crawl on all fours in lightning speed! We got him a slide a few weeks ago. He is still warming up to it but he has been trying to walk/climb up the slide himself. Kyle was able to stand unassisted for 20 seconds again during one of the PT sessions but in general could only do it up to 5-6 seconds at a time. He is just too scared and lacks the confidence to let go and be on his own.
Kyle had his two-year well child check-up a few weeks ago and he had gained over one pound since his last visit at the end of April! Kyle's feedings are still up and down and lately his overall volume of milk consumption has decreased slightly. In an effort to increase his volume and try to decrease his vomiting I have lowered the calorie concentration of his milk slightly. It did not really increase his intake unfortunately, but he is vomiting less. We have also added back one solids offering per day, so instead of only getting solids at dinner, he is now also getting a second snack at lunch time. The move has made him more interested in solids and he is now swallowing small amounts of solids again. Last week we ordered pizza for dinner just because I was too lazy to cook. We did not expect Kyle to eat it (usually I would plan our meals around Kyle and try to serve items that he would/could easily eat but not that night when we ordered pizza). We were shocked to see that he was actually interested in it and bit and chewed on it 20+ times and actually swallowed some! In the past few weeks Kyle has also been eating tiny amounts of rice, spaghetti, biscuits, and chicken nuggets (all in minute amounts though) and we were quite pleased to see the interest.
Kyle also had his six-months follow-up with neurology last week. Since he's been seizure-free for two years now we talked about possibly starting to wean him off of his seizure medications. The first step would be to have a short one-hour in-office EEG. If the EEG is normal and does not show seizure tendencies then they would schedule him for an overnight in-patient EEG just to make sure there are still no seizure tendencies over a longer period of time in case a short one-hour EEG doesn't catch everything. If the in-office EEG is still abnormal and shows seizure tendencies then it means the current medications he's on are doing their job in preventing seizures and therefore they would just keep everything as is and there would be no need for an overnight evaluation at the hospital. We were able to schedule the in-office right away last Thursday and the results came back the very next day. The good news is that the EEG showed NO seizure tendencies (yay!!). However, there were intermittent activities that COULD lead time seizure tendencies. So I thought for sure they were going to say that because there would still be seizure tendencies they would just keep him on the meds and we'll try again in a year. I was shocked when they said that Dr. Lindsey actually recommended the overnight in-patient EEG for further evaluation. The in-patient EEG is currently scheduled for early next month but we will try to see if we can get it done sooner. We are keeping our fingers crossed that he will be able to come off on some of his medications because they do cause dizziness, blurred vision, and appetite (Topamax is sometimes prescribed as a weight-loss drug). I have high hopes that one day he can come off of these meds and his vision and appetite will improve.
We also talked about Kyle's inability to stand unassisted and taking independent steps. Dr. Lindsey thinks it's more of a tone issue than anything else. And to address the tone issue, she agrees with Kyle's PT that Botox injections might be beneficial. She is recommending Botox to orthopedics and we will be discussing more details with the orthopedic surgeon at our next visit. It will be an outpatient procedure done under anesthesia so we will possibly have the dental procedure done at the same time, although we can no longer spot the cavity in Kyle's teeth, and therefore we have been more relaxed about the whole dental issue lately.
Since Kyle has been vomiting less he is now gaining weight at a more normal and steady pace, even though his overall intake and calories consumed aren't as much. I truly believe for him vomit control is more important than volume cramming. Kyle now weighs 21 lbs 3 oz! And for the longest time it felt like he would never get over 21 lbs (seeing how he already hit 20 lbs a year ago) and we did it! Also, now that I know he could still gain weight and is healthy and not dehydrated or constipated I am becoming more relaxed towards his feedings. I am disappointed still when he doesn't take much for one feeding or even for 2-3 days but I no longer freak out or have the constant pressure that we might need to put the tube back in or that he is going to continue to lose weight. Also, with the decreased pressure in feeding, I am now able to work on Kyle's other developmental needs such as speech and cognitive skills. I am no longer only thinking about how much he's eating or not eating 24 hours a day. It's still stressful for sure but I'm slowly getting there too!
Kyle had his two-year well child check-up a few weeks ago and he had gained over one pound since his last visit at the end of April! Kyle's feedings are still up and down and lately his overall volume of milk consumption has decreased slightly. In an effort to increase his volume and try to decrease his vomiting I have lowered the calorie concentration of his milk slightly. It did not really increase his intake unfortunately, but he is vomiting less. We have also added back one solids offering per day, so instead of only getting solids at dinner, he is now also getting a second snack at lunch time. The move has made him more interested in solids and he is now swallowing small amounts of solids again. Last week we ordered pizza for dinner just because I was too lazy to cook. We did not expect Kyle to eat it (usually I would plan our meals around Kyle and try to serve items that he would/could easily eat but not that night when we ordered pizza). We were shocked to see that he was actually interested in it and bit and chewed on it 20+ times and actually swallowed some! In the past few weeks Kyle has also been eating tiny amounts of rice, spaghetti, biscuits, and chicken nuggets (all in minute amounts though) and we were quite pleased to see the interest.
Kyle also had his six-months follow-up with neurology last week. Since he's been seizure-free for two years now we talked about possibly starting to wean him off of his seizure medications. The first step would be to have a short one-hour in-office EEG. If the EEG is normal and does not show seizure tendencies then they would schedule him for an overnight in-patient EEG just to make sure there are still no seizure tendencies over a longer period of time in case a short one-hour EEG doesn't catch everything. If the in-office EEG is still abnormal and shows seizure tendencies then it means the current medications he's on are doing their job in preventing seizures and therefore they would just keep everything as is and there would be no need for an overnight evaluation at the hospital. We were able to schedule the in-office right away last Thursday and the results came back the very next day. The good news is that the EEG showed NO seizure tendencies (yay!!). However, there were intermittent activities that COULD lead time seizure tendencies. So I thought for sure they were going to say that because there would still be seizure tendencies they would just keep him on the meds and we'll try again in a year. I was shocked when they said that Dr. Lindsey actually recommended the overnight in-patient EEG for further evaluation. The in-patient EEG is currently scheduled for early next month but we will try to see if we can get it done sooner. We are keeping our fingers crossed that he will be able to come off on some of his medications because they do cause dizziness, blurred vision, and appetite (Topamax is sometimes prescribed as a weight-loss drug). I have high hopes that one day he can come off of these meds and his vision and appetite will improve.
We also talked about Kyle's inability to stand unassisted and taking independent steps. Dr. Lindsey thinks it's more of a tone issue than anything else. And to address the tone issue, she agrees with Kyle's PT that Botox injections might be beneficial. She is recommending Botox to orthopedics and we will be discussing more details with the orthopedic surgeon at our next visit. It will be an outpatient procedure done under anesthesia so we will possibly have the dental procedure done at the same time, although we can no longer spot the cavity in Kyle's teeth, and therefore we have been more relaxed about the whole dental issue lately.
Since Kyle has been vomiting less he is now gaining weight at a more normal and steady pace, even though his overall intake and calories consumed aren't as much. I truly believe for him vomit control is more important than volume cramming. Kyle now weighs 21 lbs 3 oz! And for the longest time it felt like he would never get over 21 lbs (seeing how he already hit 20 lbs a year ago) and we did it! Also, now that I know he could still gain weight and is healthy and not dehydrated or constipated I am becoming more relaxed towards his feedings. I am disappointed still when he doesn't take much for one feeding or even for 2-3 days but I no longer freak out or have the constant pressure that we might need to put the tube back in or that he is going to continue to lose weight. Also, with the decreased pressure in feeding, I am now able to work on Kyle's other developmental needs such as speech and cognitive skills. I am no longer only thinking about how much he's eating or not eating 24 hours a day. It's still stressful for sure but I'm slowly getting there too!
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| Trying to pull up and grab the TV |
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| He "walked" the ottoman all the way from the living room to the dining room. |
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| Up on the slide |