This week has been busy with appointments. We were down at Riley's Children Hospital two times this week. We met with the Speech-Language Pathologist (SLP) on Tuesday to work on Grant's feeding issues. She wanted us to stop offering Grant water at meal times and instead offer the water between meals. Other suggestions included going back to his smoothie drink (4oz of stage two baby food or baby yogurt mixed with 2oz of formula) during meal times and offer him crunchy things like puffed Cheetos or toddler veggie sticks. Feeding is still a struggle, but he does usually take a little bit at each meal. He is taking around 3 feedings to finish a 4oz jar of baby food. I have also been trying new foods, but nothing has been the magic ticket. I have also found out that he is not interested in grape juice. I plan on trying some apple juice next.
Then today (Thursday) we were back down to Riley to meet with the neurologist and the pediatric surgeon who did Grant's G-tube. The neurologist, told us the results of Grant's spinal tap. He had quite of few of his amino acids high, the most significant being his alanine. It was explained to me that alanine measures stress in the brain and can indicate a possible mitochondrial or metabolism disorder/disease. Unfortunately, those conditions cannot be cured, but could possibly be helped with medication. We also found out his MTHF or 5-Methyltetrahydrofolate was low. He was at a 42 (I'm not sure of the units) and I was told 40-60 is low, while 60+ is acceptable. In the last 5 years there has been new research that has shown that patients with similar values as Grant have had their neurological symptoms improve following folinic acid therapy. We were told that there are no harmful side effects to treat him, so we are going to go ahead and do that. She prescribed 4 different vitamins: Leucororin (folinic acid) 3x a day, Carnitine 3x a day, Riboflavin once a day, and CoQ10 2x a day. It was nice to have a glimmer of hope that he could make some improvements. I'm trying to not get my hopes up, but I am glad to have something new to try. She said that if he improves that it would be in a few weeks. If he does improve, Grant will be apart of the very small group that is able to find some sort of diagnosis through a spinal tap. There are only 4 people that she is currently treating for a folinic deficiency (all of which showed an improvement folinic acid therapy).
The last appointment wasn't very eventful. The pediatric surgeon said that his g-tube looked great and he could take baths, go swimming, or do whatever he wanted. We only need to go back to see him as needed. Yay! Next time we go back to Riley is May 17th. I will be happy to stay in town for a while!
Now hopefully all these new medications will be covered or are inexpensive because I haven't tried to pick them up from Walgreen's yet...
Thursday, April 25, 2013
Wednesday, April 17, 2013
Ups and Downs
We finally have fallen into a schedule with Grant. He is adjusting really well and recently has started sleeping through the night again. We are doing 3 tube feedings a day, and still giving him one bottle at night while he sleeps. So far we haven't had any problems. He does puke/spit up occasionally, but I wouldn't say that it is frequent. He is doing really well taking water by mouth, but he isn't that thrilled with very many foods or other liquids. He used to eat puffs really well, and would eat them one after another, but now puffs don't seem to interest him at all. A dietician suggested trying more bold flavors and trying to give him some watered down juice. I plan on trying that in the coming days.
I do notice that Grant is more engaged, interested, and alert. He is reaching much farther and in more directions than he used to before the tube. He is also throwing toys off his high chair tray. His therapists have said that they are impressed with his progress. He still isn't very motivated to move on his own and I really think that is the main thing that is limiting his mobility right now.
A few other things: I have said before that Grant had a genetic duplication show up on his microarray test, and that we were waiting to get his genome sequenced to see if it is significant to his medical issues... well, we were denied for the test. We are going through the appeals process, so hopefully we can win. Also, Grant has medicaid as secondary insurance now, so hopefully that will help things. We are also so looking at getting Grant baptized and we took our first class today. He should be getting baptized within a month or so!
I do notice that Grant is more engaged, interested, and alert. He is reaching much farther and in more directions than he used to before the tube. He is also throwing toys off his high chair tray. His therapists have said that they are impressed with his progress. He still isn't very motivated to move on his own and I really think that is the main thing that is limiting his mobility right now.
A few other things: I have said before that Grant had a genetic duplication show up on his microarray test, and that we were waiting to get his genome sequenced to see if it is significant to his medical issues... well, we were denied for the test. We are going through the appeals process, so hopefully we can win. Also, Grant has medicaid as secondary insurance now, so hopefully that will help things. We are also so looking at getting Grant baptized and we took our first class today. He should be getting baptized within a month or so!
Thursday, April 4, 2013
Time for the G-Tube
Grant's G-Tube surgery was scheduled for 3/27/13. The day before my dad and I took Grant to church with us. I'm not a very religious person, but we asked the priest to do a special blessing for Grant. The priest said a little prayer about guiding the doctors during Grant's surgery. I figured it wouldn't hurt anything to have some extra prayers!
The day of Grant's surgery we woke up early and left for Riley at 5:30am. The trip down there was uneventful and the check in process went fast. They called us back and asked me a bunch of questions about Grant's health and current medications. We met with the anesthesiologist, the pediatric surgeon, and the neurologist (he had a spinal tap done to check for rare, but treatable neurological disorders). We signed a bunch of consent forms and had plenty of time to have the doctors answer our questions. We took off his clothes and took a picture of his beautiful belly, and then another picture of him in his surgery gown.
We checked in at the waiting area and then headed down the the McDonald's in the lobby. We were grabbing a drink and a small snack when I got a call from the surgeon saying that the g-tube was in and everything was good. He told us the neurologist still had to finish his procedure and it should only be another half hour. We headed upstairs and continued our wait in the waiting area.
Finally, they called us back and we were in a large recovery room with many other children. I got to hold Grant and he was pretty sleepy and fussy. After about a half an hour we were able to move to our individual room. I wish I would have taken a picture of the room because it was nicer than my recovery room after having Grant. It had two TVs, a DVD player, and a video game system!
Grant was pretty sleepy the first day, and he was also in pain when you moved him (to change diapers). I felt terrible for him. The first night was pretty rough too. He cried a ton! I think now he might have been hungry because they only did half feeds for him that night after surgery. He was a completely different boy after we fed him the next day.
Things have still been a little rough during the nights, but he has been acting completely fine during the day since the day after surgery. His bowels aren't quite as regular as they used to be. I'm not sure if it has to do with the surgery, getting more to eat, or that we changed from Pediasure to Nutren Jr. I'm hoping that things get regulated soon.
I really do think that he seems more engaged and interested in toys now. He is making more vocalizations too. I'm not sure if I'm not reading too far into his behaviors, or wanting to see a change in him, but I really do think that a change is there. Time will tell more, but either way, I still think it was the right decision!
The day of Grant's surgery we woke up early and left for Riley at 5:30am. The trip down there was uneventful and the check in process went fast. They called us back and asked me a bunch of questions about Grant's health and current medications. We met with the anesthesiologist, the pediatric surgeon, and the neurologist (he had a spinal tap done to check for rare, but treatable neurological disorders). We signed a bunch of consent forms and had plenty of time to have the doctors answer our questions. We took off his clothes and took a picture of his beautiful belly, and then another picture of him in his surgery gown.
We checked in at the waiting area and then headed down the the McDonald's in the lobby. We were grabbing a drink and a small snack when I got a call from the surgeon saying that the g-tube was in and everything was good. He told us the neurologist still had to finish his procedure and it should only be another half hour. We headed upstairs and continued our wait in the waiting area.
Finally, they called us back and we were in a large recovery room with many other children. I got to hold Grant and he was pretty sleepy and fussy. After about a half an hour we were able to move to our individual room. I wish I would have taken a picture of the room because it was nicer than my recovery room after having Grant. It had two TVs, a DVD player, and a video game system!
Grant was pretty sleepy the first day, and he was also in pain when you moved him (to change diapers). I felt terrible for him. The first night was pretty rough too. He cried a ton! I think now he might have been hungry because they only did half feeds for him that night after surgery. He was a completely different boy after we fed him the next day.
Things have still been a little rough during the nights, but he has been acting completely fine during the day since the day after surgery. His bowels aren't quite as regular as they used to be. I'm not sure if it has to do with the surgery, getting more to eat, or that we changed from Pediasure to Nutren Jr. I'm hoping that things get regulated soon.
I really do think that he seems more engaged and interested in toys now. He is making more vocalizations too. I'm not sure if I'm not reading too far into his behaviors, or wanting to see a change in him, but I really do think that a change is there. Time will tell more, but either way, I still think it was the right decision!
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