We had our check-up apt. with the Swedish Keto team this week and we had a lot to talk about (another 2 hour apt.). It is a good thing we always go at the end of the day and are their last patient of the day. :-)
After a long discussion regarding the recent seizure activity we decided to increase Joshua's Keto ratio to try and gain back seizure control. So, on Wednesday this week we went up to 2.75:1 and then in a few weeks we will go up again to 3.1:1 which is where we were at prior to Joshua getting really sick in December. I am hoping this will do the trick to gain back complete seizure control. The Keto team does not think that the stamps and/or food coloring had anything to do with it, but it is more likely caused by his sometimes cheating and/or his Doose Syndrome doing what it does to a lot of kiddos. So, we will press on and increase the ratio and hope that things settle down. We are also going to increase the amount of MCT oil he takes in from ~20g to ~30g per day as MCT oil boosts ketones which should help stop the seizures. So far he has been fine with the increase in ratio and the added oil so that is good news!
They also want us to get new labs drawn in about 3 weeks so that we can take a look at his complete blood panel, med levels and ketone levels. We will not add any iron supplements until we get the new blood drawn as they want to ensure he really is anemic before making us give him another supplement since we already have so many to get in him every day. Also, he hasn't been taking his multi-vitamin every day so we are going to do better at that and hopefully that will help with his iron levels as well. We will stay tuned until we get his new lab work back in about a month.
Still no word on the results of his genetic testing so we are still in a waiting/holding pattern on that. I wish they were back, but we knew it would take several months to get the results.
We are supposed to go back to see his neurologist on March 18th, but I now have to go out of town that day so I will need to move that appt. I'm hoping to still get into the neuro in March as we have quite a lot to discuss. I was really wanting to talk about getting off Zonegran, but with his recent seizure activity I doubt that will be an option. :-(
We haven't seen anymore absence seizures which is great, but he is having some Myoclonic seizures still, although not every day. Last night he had quite a few - about 8 when I put him to bed. I'm hoping we are back to 0 tonight. Every night is a new hope for another seizure free day.
As if we didn't have enough Dr. appointments, we are thinking of going to see a behavioral therapist who can help us with Joshua's behavior as the last few months have been extremely bad/difficult and things have gotten even worse over the last few weeks. I think we need some outside help to deal with some of his behavior and emotional issues as sometimes we are just at a loss as to what to do. The good news is that this week we had a breakthrough regarding PJs and Chip won the battle! He has been wearing clothes last few days so it feels good to have gotten past one small hurdle. Hey, we will take the "wins" where we can.
Until next time......
Friday, February 15, 2013
Saturday, February 9, 2013
5-Year Check Up
This week Joshua had his 5-year check up with his pediatrician.
The first thing they wanted to do was check his vision so the nurse asked me "will he do better identifying shapes or numbers on the chart?". Since he does not recognize any numbers I had to go with shapes and tell the nurse that my 5-year old does not recognize numbers yet. He named the shapes she pointed to with boys eyes open, but didn't understand the concept of covering up one eye and doing the same thing so he started shutting down and that was the end of that test! :-)
Next they wanted him to put on a gown for the appt. and when we suggested it to him, he started to have a major melt down so we "passed" on wearing the gown (I knew his Dr. would understand and work around it). To give some background, Joshua has been refusing to wear clothes for quite awhile now and will only wear PJs. I'm sure to most people this sounds absurd and they are thinking to themselves - well just force him to wear clothes - after all, we are the parents. Parenting a child with special needs is a whole other ball game and this is not a normal child's type refusal - we have hour long BATTLES over wearing clothes in which I don't even want to describe the level of rage he gets into over it. So, we usually just decide to choose our battles and let him wear PJs. Anyway, we had been making some progress in this area in getting him to wear clothes OVER his PJs, but on the day of his appt. we actually got him into his clothes with no PJs. Since we had won for the day, I was not going to rock the boat in the Dr.'s office over a silly gown. Our Dr. didn't mind in the least. :-)
Next the nurse told us that the Dr. likes to check all kids iron levels at 5 years old so she said she was going to take his blood via a finger prick. Joshua was sitting on the table by this time and heard "take out blood" and so he immediately slid his shirt sleeve up and held out his arm to her for her to take his blood. It was cute, but also sad to see that he has had so many blood draws that he hears the words and just gives his arm over like a pro. You would not see that in most kids! We explained they were just going to poke his finger and he didn't need to have blood taken out the normal way. She poked his finger and he sat there, totally un-phased and no crying - the nurse was amazed. Yep, our Doosie is a tough guy!
Keto can stunt kids growth because of what they are eating and the calorie restrictions so I was really interested to see how his weight and height would compare to last year and I was pleasantly surprised that he did indeed grow some from last year. Granted, we didn't start diet therapy until May and didn't switch to keto until November so he may not grow as much in 2013. He gained 2 pounds (now 45 pounds) and grew 1 and 1/2 inches (now 44 inches) in the last year. He is 75th percentile for both height and weight so that is great news!
Joshua's iron level came back low (he's anemic) which is not too surprising when you look at what he eats every day. She wanted to put him on an iron supplement, but when I asked what kind she said it was a liquid and I told her it probably had sugar in it and so he can't have it. So, we agreed I would ask our Swedish Keto team next week at our apt. what kind of iron supplement is okay to have on Keto. So, we'll get that straightened out next week. His pediatrician also wants him on fluoride, but we were unsure if we could do that as well so we'll get that answered next week too. So much to think about with this diet - everything has to be carefully thought out.
Everything else checked out well with the pediatrician so that was good. We did talk about Joshua's behavior issues and she did mention that being anemic can make a person really irritable and crabby so that if we get his iron levels back up with a supplement that he may start acting a bit better. Wouldn't that be nice! All in all it was a successful trip to the pediatrician!
In other news, we seem to have lost a bit of seizure control over the last couple weeks. We have been seeing some absence seizures during the day (not every day mind you) and some Myoclonic seizures at night (albeit very small ones). I'm not sure why we have lost some control - I thought it started because of some stamps and food coloring he got into, but my Keto team said that is not very likely and since he has continued to have seizures since then, I'm beginning to agree with them. We go back to see the Keto team on Monday so will discuss what we think is going on and possibly decide on raising his ratio. We weaned off a med in December (Zarontin) and that med is supposed to help with absence seizures so I'm hoping it is not the wean that did it as I REALLY don't want to put him back on the med. Since coming off the med he is starting to retain some information and learn a little bit at school. Since coming off that med he has started counting, saying his ABCs and singing songs (all things we lost when seizures started). It would kill me to have to put him back on that med and lose those skills again. I would much rather go up on his ratio on the diet and try to fix the issue that way. We had a great seizure free run from December 14th - January 26th (44 glorious days), but things started to change on Jan. 27th when he had two absence seizures at dinner time. That was heart breaking because we have not seen a daytime seizure in MONTHS and I just had a pitt in my stomach about it. I have faith we will get it figured out and get full control again, but it certainly is frustrating.
People asked me a lot when he was seizure free if I was just over the moon excited and could finally relax. My response was always that I'm over the moon that TODAY he is seizure free, but that I'm cautiously optimistic about every day forward and that I'm still nervous every day about seeing a seizure. I think some people thought that was weird - why not just enjoy it? It is hard to explain, but with epilepsy and his disorder especially it is hard to get comfortable as you are always suspecting a shoe to drop because well, so far one always has. I've heard countless stories from other Doose parents about losing control at various times, so like I said, cautiously optimistic! This fight is going to be long and so we take it one day at a time and are grateful for every seizure free day we get along the way.
More to come next week after we see the Keto team on Monday. Hopefully we won't have any seizures this weekend while we wait.
The first thing they wanted to do was check his vision so the nurse asked me "will he do better identifying shapes or numbers on the chart?". Since he does not recognize any numbers I had to go with shapes and tell the nurse that my 5-year old does not recognize numbers yet. He named the shapes she pointed to with boys eyes open, but didn't understand the concept of covering up one eye and doing the same thing so he started shutting down and that was the end of that test! :-)
Next they wanted him to put on a gown for the appt. and when we suggested it to him, he started to have a major melt down so we "passed" on wearing the gown (I knew his Dr. would understand and work around it). To give some background, Joshua has been refusing to wear clothes for quite awhile now and will only wear PJs. I'm sure to most people this sounds absurd and they are thinking to themselves - well just force him to wear clothes - after all, we are the parents. Parenting a child with special needs is a whole other ball game and this is not a normal child's type refusal - we have hour long BATTLES over wearing clothes in which I don't even want to describe the level of rage he gets into over it. So, we usually just decide to choose our battles and let him wear PJs. Anyway, we had been making some progress in this area in getting him to wear clothes OVER his PJs, but on the day of his appt. we actually got him into his clothes with no PJs. Since we had won for the day, I was not going to rock the boat in the Dr.'s office over a silly gown. Our Dr. didn't mind in the least. :-)
Next the nurse told us that the Dr. likes to check all kids iron levels at 5 years old so she said she was going to take his blood via a finger prick. Joshua was sitting on the table by this time and heard "take out blood" and so he immediately slid his shirt sleeve up and held out his arm to her for her to take his blood. It was cute, but also sad to see that he has had so many blood draws that he hears the words and just gives his arm over like a pro. You would not see that in most kids! We explained they were just going to poke his finger and he didn't need to have blood taken out the normal way. She poked his finger and he sat there, totally un-phased and no crying - the nurse was amazed. Yep, our Doosie is a tough guy!
Keto can stunt kids growth because of what they are eating and the calorie restrictions so I was really interested to see how his weight and height would compare to last year and I was pleasantly surprised that he did indeed grow some from last year. Granted, we didn't start diet therapy until May and didn't switch to keto until November so he may not grow as much in 2013. He gained 2 pounds (now 45 pounds) and grew 1 and 1/2 inches (now 44 inches) in the last year. He is 75th percentile for both height and weight so that is great news!
Joshua's iron level came back low (he's anemic) which is not too surprising when you look at what he eats every day. She wanted to put him on an iron supplement, but when I asked what kind she said it was a liquid and I told her it probably had sugar in it and so he can't have it. So, we agreed I would ask our Swedish Keto team next week at our apt. what kind of iron supplement is okay to have on Keto. So, we'll get that straightened out next week. His pediatrician also wants him on fluoride, but we were unsure if we could do that as well so we'll get that answered next week too. So much to think about with this diet - everything has to be carefully thought out.
Everything else checked out well with the pediatrician so that was good. We did talk about Joshua's behavior issues and she did mention that being anemic can make a person really irritable and crabby so that if we get his iron levels back up with a supplement that he may start acting a bit better. Wouldn't that be nice! All in all it was a successful trip to the pediatrician!
In other news, we seem to have lost a bit of seizure control over the last couple weeks. We have been seeing some absence seizures during the day (not every day mind you) and some Myoclonic seizures at night (albeit very small ones). I'm not sure why we have lost some control - I thought it started because of some stamps and food coloring he got into, but my Keto team said that is not very likely and since he has continued to have seizures since then, I'm beginning to agree with them. We go back to see the Keto team on Monday so will discuss what we think is going on and possibly decide on raising his ratio. We weaned off a med in December (Zarontin) and that med is supposed to help with absence seizures so I'm hoping it is not the wean that did it as I REALLY don't want to put him back on the med. Since coming off the med he is starting to retain some information and learn a little bit at school. Since coming off that med he has started counting, saying his ABCs and singing songs (all things we lost when seizures started). It would kill me to have to put him back on that med and lose those skills again. I would much rather go up on his ratio on the diet and try to fix the issue that way. We had a great seizure free run from December 14th - January 26th (44 glorious days), but things started to change on Jan. 27th when he had two absence seizures at dinner time. That was heart breaking because we have not seen a daytime seizure in MONTHS and I just had a pitt in my stomach about it. I have faith we will get it figured out and get full control again, but it certainly is frustrating.
People asked me a lot when he was seizure free if I was just over the moon excited and could finally relax. My response was always that I'm over the moon that TODAY he is seizure free, but that I'm cautiously optimistic about every day forward and that I'm still nervous every day about seeing a seizure. I think some people thought that was weird - why not just enjoy it? It is hard to explain, but with epilepsy and his disorder especially it is hard to get comfortable as you are always suspecting a shoe to drop because well, so far one always has. I've heard countless stories from other Doose parents about losing control at various times, so like I said, cautiously optimistic! This fight is going to be long and so we take it one day at a time and are grateful for every seizure free day we get along the way.
More to come next week after we see the Keto team on Monday. Hopefully we won't have any seizures this weekend while we wait.
Sunday, February 3, 2013
Seizure Freedom (mostly) and 1-Year Anniversary
I've been meaning to post this for awhile now and life seems to be getting in the way of my blogging time. :-) I wanted to post when Joshua hit one month seizure free and that came and went and before I could post he had a seizure so our "clock" had to be reset. Let me back up a little.....
December 13th was Joshua's "last" seizure for quite awhile and so December 14th became our new seizure free clock day 1. We made it through the rest of December without incident and the first few weeks of January so on January 14th we celebrated BIG time as we had made it one month without seeing a seizure. That was a HUGE milestone for us and I was beginning to think he would NEVER have another one and this Doose beast that we had been fighting would be dead forever. Well, I guess we should never get too comfortable. January was going exceedingly well until January 27th (Sunday) when Joshua had two absence seizures in our kitchen around dinner time about 20 minutes apart. The first one made both Chip and I pause and we looked at each other not speaking, but our eyes said "was that just a seizure?". About 20 minutes later Joshua was sitting with me at the dinner table and he went into a deep stare for about 5 seconds and Chip and I were calling his name and I was snapping my fingers right in front of his face to no response. We knew then for sure it had been a seizure and so was the other one. We both tried hard not to appear devastated, but it was hard. For me, the hardest part was knowing he has not had a seizure while being awake in MONTHS and I wondered if were going to descend into hell again. I was trying to figure out why Joshua would have two seizures this night and when I gave him a bath that night I noticed he had green food coloring on his legs from when he got into the cupboard earlier in the day. I also noticed he had a few leftover stamps on his hand from the day before. It dawned on me that he perhaps got carbohydrates absorbed through his skin from these products. I reached out to my keto peeps on whether this was a possibility and got some different responses. So, while I don't know if that is what caused his seizures, I'm certainly hoping that is the case because it is preventable in the future. Joshua has never been sensitive to environmental carbs like some kids, but this was a reminder that we need to be more vigilant as never know what can be a trigger. While going to bed that night I could not sleep so we had to put the baby monitor on Joshua again as I was just too nervous something was going to happen. Nothing did, but it just put me back in that old place of being so worried again - ugh!
Joshua also had a Myoclonic seizure on January 28th and again on the 29th (his birthday) shortly after falling asleep. They were small and not noticeable to someone who doesn't know what they are looking for, but I'm pretty certain that is what they were. So, we started Joshua's seizure clock over on January 30th and it had been going well up until today. Joshua fell asleep with Cole today in the recliner and Cole reported a Myoclonic seizure, but I can't be 100% sure because I didn't see it. However, Cole has seen a LOT of Myoclonic seizures from Joshua over the last year so it wouldn't surprise me if he could spot one. And, when I put Joshua to bed tonight I'm pretty certain he had one as well. So, we will re-start the clock again tomorrow, Feb. 4th. I would be lying if I didn't say I was nervous about the recent activity and am hoping like hell it is just a blip and not a return. I'm still keeping the FAITH and HOPE that we will beat this beast called Doose Syndrome.
We have another apt. with his keto team at Swedish next week so we will talk to them about the activity and see if they want to do anything - we could possibly increase his ratio on the diet. We'll see what they have to say. We also have another apt. with his neurologist in March and I will want to talk about weaning him off his last medication - Zonegran. I really want him off all his meds so we can see what his cognitive abilities will be like without drugs, but I also don't want to rush it, especially if we are seeing activity. Weaning the other two drugs did not scare me, but this one does. It is a fine balance to know what to do and when.
It is hard to believe, but we have gone past our 1-year anniversary of dealing with seizures. We first noticed Joshua having seizures (well, we didn't know they were seizures at first, but "something") in early January 2012. I suspect he was having them prior to us noticing and I will always wonder for how long, but our journey has been in full swing for 1-year now. For a long time in 2012, I just wanted to turn the clock back and go back to Christmas of 2011 before seizures took over our lives. I am now in a place where I don't want to turn the clock back, but want to move forward. I would NEVER want to re-live 2012 again and am hoping for a much calmer and happy 2013. So far, that is proving to be the case. Chip and I have survived the hardest year of our lives and proved that we are much stronger that we thought and that we are true team, in every sense of the word. Sometimes I am not sure how we survived and I know that none of us will be the same, but we continue to march forward having faith and hope that one day seizures and keto food will not consume our thoughts all day every day. Until that day, we will keep fighting for Joshua (and all kids who battle epilepsy) and if we have to, keep re-setting our seizure free clock.
P.S. Please educate and advocate regarding epilepsy whenever possible! It is so important to get the funds for research that epilepsy desperately needs.
December 13th was Joshua's "last" seizure for quite awhile and so December 14th became our new seizure free clock day 1. We made it through the rest of December without incident and the first few weeks of January so on January 14th we celebrated BIG time as we had made it one month without seeing a seizure. That was a HUGE milestone for us and I was beginning to think he would NEVER have another one and this Doose beast that we had been fighting would be dead forever. Well, I guess we should never get too comfortable. January was going exceedingly well until January 27th (Sunday) when Joshua had two absence seizures in our kitchen around dinner time about 20 minutes apart. The first one made both Chip and I pause and we looked at each other not speaking, but our eyes said "was that just a seizure?". About 20 minutes later Joshua was sitting with me at the dinner table and he went into a deep stare for about 5 seconds and Chip and I were calling his name and I was snapping my fingers right in front of his face to no response. We knew then for sure it had been a seizure and so was the other one. We both tried hard not to appear devastated, but it was hard. For me, the hardest part was knowing he has not had a seizure while being awake in MONTHS and I wondered if were going to descend into hell again. I was trying to figure out why Joshua would have two seizures this night and when I gave him a bath that night I noticed he had green food coloring on his legs from when he got into the cupboard earlier in the day. I also noticed he had a few leftover stamps on his hand from the day before. It dawned on me that he perhaps got carbohydrates absorbed through his skin from these products. I reached out to my keto peeps on whether this was a possibility and got some different responses. So, while I don't know if that is what caused his seizures, I'm certainly hoping that is the case because it is preventable in the future. Joshua has never been sensitive to environmental carbs like some kids, but this was a reminder that we need to be more vigilant as never know what can be a trigger. While going to bed that night I could not sleep so we had to put the baby monitor on Joshua again as I was just too nervous something was going to happen. Nothing did, but it just put me back in that old place of being so worried again - ugh!
Joshua also had a Myoclonic seizure on January 28th and again on the 29th (his birthday) shortly after falling asleep. They were small and not noticeable to someone who doesn't know what they are looking for, but I'm pretty certain that is what they were. So, we started Joshua's seizure clock over on January 30th and it had been going well up until today. Joshua fell asleep with Cole today in the recliner and Cole reported a Myoclonic seizure, but I can't be 100% sure because I didn't see it. However, Cole has seen a LOT of Myoclonic seizures from Joshua over the last year so it wouldn't surprise me if he could spot one. And, when I put Joshua to bed tonight I'm pretty certain he had one as well. So, we will re-start the clock again tomorrow, Feb. 4th. I would be lying if I didn't say I was nervous about the recent activity and am hoping like hell it is just a blip and not a return. I'm still keeping the FAITH and HOPE that we will beat this beast called Doose Syndrome.
We have another apt. with his keto team at Swedish next week so we will talk to them about the activity and see if they want to do anything - we could possibly increase his ratio on the diet. We'll see what they have to say. We also have another apt. with his neurologist in March and I will want to talk about weaning him off his last medication - Zonegran. I really want him off all his meds so we can see what his cognitive abilities will be like without drugs, but I also don't want to rush it, especially if we are seeing activity. Weaning the other two drugs did not scare me, but this one does. It is a fine balance to know what to do and when.
It is hard to believe, but we have gone past our 1-year anniversary of dealing with seizures. We first noticed Joshua having seizures (well, we didn't know they were seizures at first, but "something") in early January 2012. I suspect he was having them prior to us noticing and I will always wonder for how long, but our journey has been in full swing for 1-year now. For a long time in 2012, I just wanted to turn the clock back and go back to Christmas of 2011 before seizures took over our lives. I am now in a place where I don't want to turn the clock back, but want to move forward. I would NEVER want to re-live 2012 again and am hoping for a much calmer and happy 2013. So far, that is proving to be the case. Chip and I have survived the hardest year of our lives and proved that we are much stronger that we thought and that we are true team, in every sense of the word. Sometimes I am not sure how we survived and I know that none of us will be the same, but we continue to march forward having faith and hope that one day seizures and keto food will not consume our thoughts all day every day. Until that day, we will keep fighting for Joshua (and all kids who battle epilepsy) and if we have to, keep re-setting our seizure free clock.
P.S. Please educate and advocate regarding epilepsy whenever possible! It is so important to get the funds for research that epilepsy desperately needs.
Survived 1st Keto Birthday
Wow - I haven't posted in awhile! :-) I had to commemorate that we survived Joshua's 1st birthday on Keto - yahoo! When we started diet therapy (will be 9 months on Tuesday) one of the things I feared the most was his birthday. How were we ever going to get through his birthday when he can't have cake I wondered. At the time I thought "Well, that is months away - I will deal with it when I have to". It snuck up on me faster than I thought it would, but it ended up being so much better than I ever imagined.
Joshua turned 5 officially last Tuesday on January 29th. We had a quiet celebration at home with just the 4 of us, but Joshua got a special "treat" - his birthday keto cupcake! A few weeks prior to his birthday I emailed Joshua's dietitian (Nancy) and asked for cupcake and/or cake recipes that I could use for Joshua's birthday so he would not be completely left out. Nancy created several recipes for us to try in our ketocalculator and I was so grateful. The weekend prior to this birthday I started to make the "practice" cupcake and it turned out great. It not only tasted like a "real" cupcake, but also looked like one (including keto friendly frosting - aka whip cream). Joshua LOVED his practice cupcake so I knew he would love it all the more on his birthday. He saw me make it the night before his birthday so he was excited about it all day and could not wait. We sang Happy Birthday to him after dinner and he had the biggest smile on his face as he ate his birthday cupcake. He was sooo happy and I was so glad we could still make his birthday special.
Yesterday we had his birthday party at Super Jump Party Zone (a bounce house type place). This was super special to me because his birthday party last year was scheduled at this place, but when he started having so many seizures I cancelled his party there and moved it to a bowling alley. I was just way too nervous to have him in a bounce house while he was having so many seizures per day. Last year's birthday party was really hard for me - he was just not "himself". I can hardly bring myself to look at the pictures from his party last year as he is having absence seizures in so many of them and it just breaks my heart. It was the beginning of a hell that I hadn't even fully known yet and it was just starting.
It was awesome to be able to give Joshua his bounce house birthday party this year! I was still a nervous wreck throughout the party and watched him very closely, but he did great! He had so much fun and had enough energy to run around. He did get tired a few times and had to take breaks, but he had more energy than we have seen in almost a year. We had no food at the party except for cupcakes as I thought it would be too hard on Joshua otherwise. I gave Joshua his special keto cupcake first with a candle that he blew out and he lit up when he saw it. He really loved everyone singing "Happy Birthday" to him and being the center of attention. He ate up his cupcake just as quickly as he did the 1st time and not once asked me for a "normal" cupcake like I had for the other kids. Instead of focusing on food, we focused on friends and playing and that is what is most important anyway. He had a great time at his party and it warmed my heart to see him so happy and full of joy.
Below are a few pics from his birthday party and one last time I just want to shout "We survived our 1st birthday on Keto!!!!".
Joshua turned 5 officially last Tuesday on January 29th. We had a quiet celebration at home with just the 4 of us, but Joshua got a special "treat" - his birthday keto cupcake! A few weeks prior to his birthday I emailed Joshua's dietitian (Nancy) and asked for cupcake and/or cake recipes that I could use for Joshua's birthday so he would not be completely left out. Nancy created several recipes for us to try in our ketocalculator and I was so grateful. The weekend prior to this birthday I started to make the "practice" cupcake and it turned out great. It not only tasted like a "real" cupcake, but also looked like one (including keto friendly frosting - aka whip cream). Joshua LOVED his practice cupcake so I knew he would love it all the more on his birthday. He saw me make it the night before his birthday so he was excited about it all day and could not wait. We sang Happy Birthday to him after dinner and he had the biggest smile on his face as he ate his birthday cupcake. He was sooo happy and I was so glad we could still make his birthday special.
Yesterday we had his birthday party at Super Jump Party Zone (a bounce house type place). This was super special to me because his birthday party last year was scheduled at this place, but when he started having so many seizures I cancelled his party there and moved it to a bowling alley. I was just way too nervous to have him in a bounce house while he was having so many seizures per day. Last year's birthday party was really hard for me - he was just not "himself". I can hardly bring myself to look at the pictures from his party last year as he is having absence seizures in so many of them and it just breaks my heart. It was the beginning of a hell that I hadn't even fully known yet and it was just starting.
It was awesome to be able to give Joshua his bounce house birthday party this year! I was still a nervous wreck throughout the party and watched him very closely, but he did great! He had so much fun and had enough energy to run around. He did get tired a few times and had to take breaks, but he had more energy than we have seen in almost a year. We had no food at the party except for cupcakes as I thought it would be too hard on Joshua otherwise. I gave Joshua his special keto cupcake first with a candle that he blew out and he lit up when he saw it. He really loved everyone singing "Happy Birthday" to him and being the center of attention. He ate up his cupcake just as quickly as he did the 1st time and not once asked me for a "normal" cupcake like I had for the other kids. Instead of focusing on food, we focused on friends and playing and that is what is most important anyway. He had a great time at his party and it warmed my heart to see him so happy and full of joy.
Below are a few pics from his birthday party and one last time I just want to shout "We survived our 1st birthday on Keto!!!!".
Playing Skee Ball
Playing Fuse Ball
Going down the big slide!
Look how steep that is!
With his two "besties" - Kendra & StellaAnne
So happy!
Blowing out his candle
Enjoying his leftover whip cream
The "gang"
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