When I last wrote I stated we were going to start weaning Depakote and we have started that, but we are going slower than my Dr. suggested just to be safe. After posing a question to my online support group of Doose parents I got a lot of responses regarding the need for a really slow reduction so as not to see seizures or have other side effects (mood swings, irritability, appetite issues, etc.). So, after thinking about it for awhile we have decided to go down 1 pill every two weeks (instead of every 1 week). It cannot do any harm to go slower so we decided better to be safe than sorry and it is okay if it takes longer to wean than we thought (about 10 weeks instead of 5). So far we have only gone down 1 pill (from 3 to 2 at his evening dose) and so far it seems to be going okay. This Friday we will also reduce his morning dose from 3 pills to 2 which will make his total dosage for Depakote 2 in the morning and 2 in the evening.
We have seen 3 "possible" absence seizures since we started the wean which is another reason we are being extra cautious. I am not sure if what I saw were seizures or just him spacing out and ignoring me, but they were long enough to cause me to pause and panic. Had he been having seizures regularly I would have marked them as seizures, but since we haven't seen any in over 6 weeks I am really not sure. At the end of one of them he smiled so I don't know if he was just being "funny" and ignoring me or what. Ugh - I wish I knew for sure! We still have not seen ANY drop seizures which is great, but I worry about the possibility of the absence seizures sneaking back in. This diagnosis is such a roller coaster.
Overall the diet has been going pretty well, but I have been having a hard time the last few days. We have had family in town and have been out busy sight seeing, going places and attending events and the diet is sooooooo hard when doing those things! He has had a few meltdowns regarding food in the last few days and I almost broke down crying in front of him one day. It is so hard to see your child beg for food and know that you cannot give it to him because it may harm him, but you know he doesn't understand why you are telling him no. It is heart breaking in a lot of ways for him not to be like the other kids and indulge in what he wants. Most of the time he does pretty good, but he has his moments where I am sure he is saying to himself "this isn't fair!". And, I would whole-heartily agree with him - it is not fair. I am sure we will go through a lot of this over the next several years while he is on the diet and I'm sure it's all normal - it is just getting to me right now. We are also trying to plan vacations and trying to find a place to go where I can still keep him on his diet is tough and I feel like our options are limited. What can I say? Doose sucks!
On the positive side though the diet is keeping most of his seizures away. We still have not had a seizure free day since that one a few months ago, but I continue to hold out hope that we will get there some day. I continue to pray and hope that his brain will one day heal and that he will recover from all the damage that has been caused.
We are finally starting to make some progress on his therapies. He starts speech therapy at Mary Bridge next week and he will be going once a week for 12 weeks (to start). He is also scheduled next week to have his OT (occupational therapy) evaluation at Good Sam CTU and so hopefully after that he will start having regular OT appointments. We are still on the waiting list for PT (physical therapy), but hopefully we will start soon.
We are going camping for 3 days (leaving tomorrow) at Penrose State Park. I will be packing and preparing his food tonight (sigh) and we will hopefully have fun despite the weather not being so great right now. If all goes to crap, we can always head home as it is only an hour away from the house. I am a bit concerned as Joshua has not eaten since lunch yesterday (refused his dinner last night and everything today, including his favorite peanut butter ball) and slept for nearly 4 hours today after swim lessons. I hope it is just a phase and that he is not coming down with something. If he doesn't eat he won't have energy while we are camping which will make for us not being able to do much. We'll see how it goes - maybe tomorrow will be a better day for him. Until next time....
P.S. Chip retired last Friday from the Air Force after 22 years (the reason we had family in town). His ceremony was great and we celebrated that evening and we had a great time. I am very proud of him and glad that he is able to now stay home with Joshua during this time. He is an amazing father and husband and I'm lucky to have him. Thanks for your service, honey!
Tuesday, July 31, 2012
Thursday, July 19, 2012
Dietitian and Neuro Appt.
We had a big day today with an appointment with Joshua's dietitian and his neurologist.
Dietitian
Joshua's dietitian (Joy) was very pleased with Joshua's weight and height. His height was the same and he gained about 1/2 pound since his last appt. (he is now 44.5 pounds) This is right where she wanted him to be and she was happy with his progress. We showed her the spreadsheet we are keeping and she was impressed and thought it was working great for us. She wants us to continue with the MiraLax, baking soda, salt and soda every day like we have been doing. At the end of the appointment we were talking about starting a support group for those who are on MAD at Mary Bridge because there is no such support group now. I think there is a real lack of support for those who are on the diet (I have my online support group, but people who are not on Doose don't have that and feel very alone). I think this may have to become one of my projects (how would I fit it in?). It would be a lot of work, but it would be so great to put something like this together and bring the families who are on the diet together to support and help each other out. Something to seriously think about........
Neurologist
We had a lot to talk about today and as always, our appt. lasted about an hour and 1/2. We talked about a lot, but here are the highlights.
Dietitian
Joshua's dietitian (Joy) was very pleased with Joshua's weight and height. His height was the same and he gained about 1/2 pound since his last appt. (he is now 44.5 pounds) This is right where she wanted him to be and she was happy with his progress. We showed her the spreadsheet we are keeping and she was impressed and thought it was working great for us. She wants us to continue with the MiraLax, baking soda, salt and soda every day like we have been doing. At the end of the appointment we were talking about starting a support group for those who are on MAD at Mary Bridge because there is no such support group now. I think there is a real lack of support for those who are on the diet (I have my online support group, but people who are not on Doose don't have that and feel very alone). I think this may have to become one of my projects (how would I fit it in?). It would be a lot of work, but it would be so great to put something like this together and bring the families who are on the diet together to support and help each other out. Something to seriously think about........
Neurologist
We had a lot to talk about today and as always, our appt. lasted about an hour and 1/2. We talked about a lot, but here are the highlights.
- We are weaning off of Depakote - starting tonight! As I have posted before, I have done research and found that Depakote can interact with the diet and actually fight against the diet. So, I pushed to wean him off of Depakote to see if we can gain seizure control (e.g. get rid of the sleeping myos) that way. It will take us 6 weeks to wean off of it and if we see any of the daytime seizures return during the wean we will start going back up. Dr. Korol was comfortable with the wean since depakote levels are already sub-therapeutic so they are not protecting him as much as they used to (the diet caused them to go down). I am excited, but EXTREMELY nervous about the wean. We will be going down 1 pill per week until they are gone so tonight he had 2 pills instead of 3 (was very strange). Please keep your fingers crossed that the wean goes well both in regards to no seizures coming back and behavior (I have heard of behavior issues during med weans before).
- Joshua is going to be tested (via blood test) for Glut 1 deficiency. According to the Glut 1 Deficiency Foundation, "Glut 1 deficiency is a genetic disorder that impairs brain metabolism. Glut 1 (a protein) is responsible for transporting glucose (a sugar) across the blood-brain tissue barrier. The Glut 1 protein is made by the SLC2A1 gene, located on chromosome 1. If this gene is damaged by a mutation, the protein is not made and glucose cannot be transported into the brain cells. Glucose is the primary fuel source for the brain so patients with this have insufficient cellular energy to permit normal brain growth and function." There is no cure and the ketogenic diet is the only treatment for Glut 1 deficiency. Glut 1 deficiency is extremely rare and is a new known gene mutation and about 5% of kids with Doose have it (although my Dr. heard at a conference that the number of Doose kids with it is actually much higher). So, what does this mean if Joshua has it? Not sure yet - I don't think our treatment would change much , but it might mean we are on the diet for a lot longer than anticipated and the cognitive impairments could be more severe and/or longer lasting. But, we won't know until we get blood tested and get the results (it will take about a month after the blood test to know the results).
- We won't have another EEG for awhile - probably not until he is seizure free.
- Joshua has been having problems sleeping lately (he falls asleep just fine, but then continues to get up for hours on end and stays up extremely late). We have had sleep issues before and it is common in Doose kids, but we are getting overwhelmed by it. So, we talked about Melatonin, but was told it helps kids to fall asleep, but not "stay" asleep which is our issue. Dr. Korol suggested sugar free benadryl (need sugar free due to diet) so am on the hunt for that (maybe I can find in a tablet - need to post question to my Doose group).
- We are going to start Citra K (as soon as prescription comes through) to prevent him from getting kidney stones (which is somewhat common on the diet and one of his meds can cause kidney stones as well). We should be starting that pretty soon as well, although not too soon as I don't want to make two changes at once (weaning depakote and starting citra k) because then if the seizures return we won't know the true cause. The trick is only one change a time.
- When to move to Keto if we have to? We discussed that if weaning Depakote goes well, but does not get rid of his sleeping Myos, then how long do we give MAD to work before we switch to Keto to try to get rid of the remaining seizures? Dr. Korol suggested 3-4 months after the Depakote wean to give his body sufficient time to recover from the wean and see if MAD will take care of the rest. So, if by Christmas we are still not seizure free, I think we will be moving to Keto. If we wait until then it will would be 9 months on MAD.
- Joshua has continued to be daytime seizure free. Today is 6 weeks with no head drops and no absence seizures!!!!. We are still seeing about 5-10 Myos per day between his nap and when he goes to bed. These pesky Myos just keep hanging on - so annoyed!
Saturday, July 14, 2012
Out and About
We have decided that we cannot let Joshua's diagnosis or his diet stop us from living our lives so we have been trying to get "out and about" more lately. It helps that summer finally arrived here in Seattle and that Chip is not working. It takes a lot for us to get out of the house and to get everything coordinated so it feels like a major accomplishment when we do. We first have to figure out what food we will need to take for Joshua (e.g. what meals or snacks we will be gone during). Then we have to figure out what we will have access to while we are gone (like if we can take something that would need to be heated up or cold only). After we figure out what we think we are going to take, we have to actually make it, figure out the best way to store it (cooler, back pack, do we need ice, etc.) and then package and label it. Lastly, we have to document what we are taking in his log and figure out all the nutritional information to know if he will have enough fat in his meals and snacks.
In addition to his food, we have to figure out if we think we are going to be gone during his medication times and if there is a possibility then we have to take all his medications. This involves not only packing his medications, but everything he needs to take them with (applesauce, "juice", spoons, measuring spoon for the liquid med, etc.).
We also have to figure out his nap schedule if we are going to be gone as it is very important that he take a nap every day or he has more seizures. So, we have to decide if we are going to get out super early and be home for nap time or let him sleep in the car (if we have a long drive) or stay home until after he wakes up from his nap and then leave.
As you can see, if we are able to get everything together and actually go somewhere it is a minor miracle and so we are very proud when we do. Here are some pics from some of our recent excursions.
One Sunday in June we took the ferry over to Vashon Island and we spent the day there.
In addition to his food, we have to figure out if we think we are going to be gone during his medication times and if there is a possibility then we have to take all his medications. This involves not only packing his medications, but everything he needs to take them with (applesauce, "juice", spoons, measuring spoon for the liquid med, etc.).
We also have to figure out his nap schedule if we are going to be gone as it is very important that he take a nap every day or he has more seizures. So, we have to decide if we are going to get out super early and be home for nap time or let him sleep in the car (if we have a long drive) or stay home until after he wakes up from his nap and then leave.
As you can see, if we are able to get everything together and actually go somewhere it is a minor miracle and so we are very proud when we do. Here are some pics from some of our recent excursions.
One Sunday in June we took the ferry over to Vashon Island and we spent the day there.
Chip and Cole on the ferry ride over to Vashon
Chip and Joshua on the top of the lighthouse
Cole finding shells on the shore
A purple starfish - color of epilepsy!
Chip and Joshua on the beach
Joshua throwing rocks
Joshua, Cole and Chip on the beach
Chip and Joshua on the ferry ride back
We went to a Tacoma Rainiers game at the end of June. The Tacoma Rainiers are the AAA team for the Seattle Mariners and 3 pitchers from the team came to visit Joshua in the hospital when he had his 48 hour Video EEG at Mary Bridge Children's Hospital.
Joshua and Chip
Joshua looking at Rhubarb
Joshua and Rhubarb - love this one!
Chip and Joshua watching the game - Joshua had a hot dog w/o bun at the game
Cole so happy with his cotton candy and it did not bother Joshua
A few weeks ago on a Sunday we went to Penrose State Park for the day and had a blast. We want to go back sometime soon and go camping there over night.
Brothers at play
Joshua relaxing
Cole and Chip
Joshua and Chip
Cole and I walked out on the sand bar and a few hours later it was all covered up
Cole climbing in a tree
Chip and Cole
The 3 boys
Me and the boys
Joshua and Chip
Cole found some hidden areas in the rocks to climb through
More of Cole exploring
Boys throwing rocks in the water
What a cutie!
Last weekend we went camping at Belfair State Park. It was challenging between the diet, meds, naps and all the prep work, but we made it through. I was so worried about all we had to do for Joshua that we forgot Cole's "squeegee" to remove his eye at night. So, we ended up having to take it out with our hands. Nothing like improvising with that in the dark, but we made it work. We will be sure to remember it next time. We also have a better idea on how to do things better next time for camping so a short trip pretty close to home was great (we were about an hour from home). We hope to go camping again soon.
Joshua climbing on a rock at the playground
Cole swinging
Joshua swinging
Love this pic!
Cole climbing on the rock wall
At the top!
Joshua on the rock wall (Chip was behind him holding him for safety)
The boys sitting by the fire during lunch
Isn't he cute?
The boys roasting hot dogs
At the playground
Cole eating a smore
Joshua sitting by the camp fire
Sitting on the rock
Cole built a dam in the water
Monday, July 9, 2012
Keto Pizza
Joshua ate Keto pizza tonight! This was a major accomplishment as we tried this pizza on his first day of MAD and he spit out the first bite, said "yuck" and has refused it ever since. One of the support group Moms told me to stick with the basics for the first few months as the kids still remember what "real" pizza and other foods taste like for awhile. I guess he has either forgotten what real pizza tastes like or he is sick of hot dogs, hamburgers, sausage and eggs. He ate the whole thing and asked for seconds, but of course he could not have more or he would have had too many calories. I was fighting back tears as he was eating the pizza as we have just come so far in two months and I'm so happy to be finding more foods that he will eat. I know if we are going to keep this up for two years we need to find more things he will eat. Last night he tried and liked Keto tuna patties and he had those again for lunch today. For those of you curious as to what goes into a Keto pizza here are the ingredients (4:1 ratio = 4 times as much fat than carbs+protein).
- 30g egg whites, whipped into stiff peaks
- 17g macadamia nuts, ground
- 15g mayonnaise
- 13g olive oil
- 14g canned tomato puree
- 9g Parmesan cheese
To give you an idea, 17g of macadamia nuts is about 6-7 nuts. Portions are much smaller than normal meals, but Joshua hasn't been eating much for awhile so today was a pretty good day.
We also made a Keto dessert tonight, but he didn't like it. Oh, well - we can't win them all. He has been looking at the cook book and pointing to pictures of stuff he says he likes so we will start trying more of them and hoping we find some more things he likes to eat.
More seizures today than we have been experiencing - total of 12 today. It is a bit upsetting as we have been around 5 or less for several days now, but he did have more protein than he should have while we were camping so perhaps that is to blame? It could also be the heat - I have heard from other parents that when the outside heat temps rise that some kids have more seizures so maybe that is it? I'm not quite sure the cause, but hopefully it will go right back down again.
Here are a couple pics of Joshua tonight.
Still chopping - lots of chopping
- 30g egg whites, whipped into stiff peaks
- 17g macadamia nuts, ground
- 15g mayonnaise
- 13g olive oil
- 14g canned tomato puree
- 9g Parmesan cheese
To give you an idea, 17g of macadamia nuts is about 6-7 nuts. Portions are much smaller than normal meals, but Joshua hasn't been eating much for awhile so today was a pretty good day.
We also made a Keto dessert tonight, but he didn't like it. Oh, well - we can't win them all. He has been looking at the cook book and pointing to pictures of stuff he says he likes so we will start trying more of them and hoping we find some more things he likes to eat.
More seizures today than we have been experiencing - total of 12 today. It is a bit upsetting as we have been around 5 or less for several days now, but he did have more protein than he should have while we were camping so perhaps that is to blame? It could also be the heat - I have heard from other parents that when the outside heat temps rise that some kids have more seizures so maybe that is it? I'm not quite sure the cause, but hopefully it will go right back down again.
Here are a couple pics of Joshua tonight.
Chopping up the macadamia nuts in "the chopper"
Enjoying his pizza
Thursday, July 5, 2012
2 Months on MAD
Today is a milestone for two reasons. First, it has been exactly two months since we started MAD (Modified Atkins Diet). Second, Joshua has been daytime seizure free for 4 weeks today! Yahoo - mini celebration! Daytime seizure free means that he has not had any seizures while he is awake over the last 4 weeks so no head drops and no absence seizures. The diet IS working!!!
Daytime seizure freedom is so awesome and it is great that he is not slamming his head into the nearest object out of the blue and hurting himself. I am still not "comfortable" and every noise I hear I go look to see if he hit his head, but it is still amazing that we have not seen any of them in 4 weeks. I'm not sure how long it will take me to get comfortable, used to it and not worrying, but until then I am enjoying the daytime seizure freedom and all that comes with it.
As far as sleeping seizures - he is still having them, but the numbers have been reduced greatly. We are seeing on average 3-6 Myoclonic seizures per day when he sleeps (either during his nap or at night). This is a great number from where we came from as before he would be anywhere from 10-30 (sometimes more) every time he fell asleep. We have increased his Zonegran over the last few weeks to try to eliminate these remaining Myoclonics and at first I didn't think it helped all that much. But, after going back and looking at his seizure reports his Myoclonics did reduce after his medicine was increased (good news). We continue to hope that we will find a way to get rid of the remaining sleeping Myoclonics, even if it means switching to traditional Keto at some point.
Here is a look at this seizure count by month.
April - 490
May - 375
June - 332
July - 19 (through July 5th)
By looking at this you might think that MAD is not helping that much, but you have to look a bit deeper. First, I think the April number is severely under stated and was probably more around 700 or more. The reason it is under stated is 1/2 of that month I wasn't counting the number of seizures (just the types) and so I know I missed a lot of his Myos. I also wasn't using Seizure Tracker until part way through the month which I know skewed some of the data. May and June are accurate and you might think that a difference of 43 seizures is not that much, but you have to remember that the Myos have always been our high producing number as they come in clusters and can happen in rapid fire and they really drive up the numbers. We have eliminated the daytime drop and absence seizures, but those accounted for approximately 10/day so it doesn't look like we have gotten rid of a whole lot in terms of numbers, but we really have in quality of life. If April really was 700 then in May we reduced them almost in 1/2 and then further reduced in June. If he has 5 Myos every day for the month of July he would be at a total of 155 for the month which would be another 50% reduction. To think about going from approx. 700 seizures a month down to 155 a month in 3 months time all due to diet - pretty amazing! I am a believer.
I talked to Dr. Korol this week and shared the good news about the daytime seizure reduction and she was very happy to hear it. She said we would talk about the possibility of weaning him off Depakote at our next appt. which is July 19th (in two weeks). She said if he continues to stay daytime seizure free she would consider it. Some people might think we are crazy to try to wean a drug so soon after starting diet therapy, however I have found that Depakote can actually counter act the diet and some Doose kids have not obtained seizure freedom on the diet until they weaned off of Depakote. So, it is something I want to try to see if that will work to get rid of his remaining Myos and I would love to get him him off one of his drugs! Let's all pray for continued daytime seizure freedom so we can have that discussion in two weeks. We will also be talking about next steps if we cannot obtain seizure freedom and when/if we should switch to traditional Keto diet. It will be more difficult than what we are doing now, but if we need to go that route, we will. I don't know exactly how it would work, but I'm thinking we would give MAD at least a few more months before we switched. But, I think if he is still having daily seizures when Halloween comes around I will be seriously talking about alternatives.
Joshua had his speech therapy evaluation at Mary Bridge last week and he qualified for speech therapy. It upset me, but I'm not really sure why as I already knew that based on his school assessment and the child neurologist assessment. I guess I tricked myself into thinking that he was doing so much better lately on the diet and that maybe he had improved so much he didn't need therapy - it was possible, right? No. We received the written report in the mail and it was noted that both his receptive language skills and expressive language skills were delayed. Additionally, they have concerns regarding his attention and cognition. Sigh. Now we wait to actually have him start attending speech therapy. And, we are still on waiting lists at two places for OT and PT - ugh.
We are in full swing here for summer. I have been back at work full time for 3 weeks now and Chip has been home with the boys. Cole started playing T-Ball and we have been spending the weekends out and about finding new adventures. Tomorrow we are going camping at Belfair State Park for the weekend - the boys are so excited! I am nervous about Joshua's food, but we are only an hour from home if something happens and we need to come back. We are packing everything ahead of time and luckily camping food contains a lot of stuff he can eat (hot dogs, hamburgers, eggs, etc.). We are getting more comfortable with it and so we decided to "go for it" and continue to live our lives. We will see how it goes and I will post some pictures next week. I have also signed both boys up for swim lessons (yes, I said both boys). I found an awesome place that does lessons and they are willing to work with us to ensure Joshua is safe at all times and it is a small pool and Chip will be sitting right there the whole time in case anything happens. He will NEVER be left in the pool without someone holding onto him or him being supported. He is so excited and it feels good not to let Doose take another thing away from him and just let him be a kid. Swim lessons start next Tuesday so I will let you all know how it goes.
I think that brings everyone up to date (for now). I hope everyone had a happy and safe 4th of July. Ours was a bit different due to seizures, naps, diet and my being sick, but we made it through and still had fun.
Daytime seizure freedom is so awesome and it is great that he is not slamming his head into the nearest object out of the blue and hurting himself. I am still not "comfortable" and every noise I hear I go look to see if he hit his head, but it is still amazing that we have not seen any of them in 4 weeks. I'm not sure how long it will take me to get comfortable, used to it and not worrying, but until then I am enjoying the daytime seizure freedom and all that comes with it.
As far as sleeping seizures - he is still having them, but the numbers have been reduced greatly. We are seeing on average 3-6 Myoclonic seizures per day when he sleeps (either during his nap or at night). This is a great number from where we came from as before he would be anywhere from 10-30 (sometimes more) every time he fell asleep. We have increased his Zonegran over the last few weeks to try to eliminate these remaining Myoclonics and at first I didn't think it helped all that much. But, after going back and looking at his seizure reports his Myoclonics did reduce after his medicine was increased (good news). We continue to hope that we will find a way to get rid of the remaining sleeping Myoclonics, even if it means switching to traditional Keto at some point.
Here is a look at this seizure count by month.
April - 490
May - 375
June - 332
July - 19 (through July 5th)
By looking at this you might think that MAD is not helping that much, but you have to look a bit deeper. First, I think the April number is severely under stated and was probably more around 700 or more. The reason it is under stated is 1/2 of that month I wasn't counting the number of seizures (just the types) and so I know I missed a lot of his Myos. I also wasn't using Seizure Tracker until part way through the month which I know skewed some of the data. May and June are accurate and you might think that a difference of 43 seizures is not that much, but you have to remember that the Myos have always been our high producing number as they come in clusters and can happen in rapid fire and they really drive up the numbers. We have eliminated the daytime drop and absence seizures, but those accounted for approximately 10/day so it doesn't look like we have gotten rid of a whole lot in terms of numbers, but we really have in quality of life. If April really was 700 then in May we reduced them almost in 1/2 and then further reduced in June. If he has 5 Myos every day for the month of July he would be at a total of 155 for the month which would be another 50% reduction. To think about going from approx. 700 seizures a month down to 155 a month in 3 months time all due to diet - pretty amazing! I am a believer.
I talked to Dr. Korol this week and shared the good news about the daytime seizure reduction and she was very happy to hear it. She said we would talk about the possibility of weaning him off Depakote at our next appt. which is July 19th (in two weeks). She said if he continues to stay daytime seizure free she would consider it. Some people might think we are crazy to try to wean a drug so soon after starting diet therapy, however I have found that Depakote can actually counter act the diet and some Doose kids have not obtained seizure freedom on the diet until they weaned off of Depakote. So, it is something I want to try to see if that will work to get rid of his remaining Myos and I would love to get him him off one of his drugs! Let's all pray for continued daytime seizure freedom so we can have that discussion in two weeks. We will also be talking about next steps if we cannot obtain seizure freedom and when/if we should switch to traditional Keto diet. It will be more difficult than what we are doing now, but if we need to go that route, we will. I don't know exactly how it would work, but I'm thinking we would give MAD at least a few more months before we switched. But, I think if he is still having daily seizures when Halloween comes around I will be seriously talking about alternatives.
Joshua had his speech therapy evaluation at Mary Bridge last week and he qualified for speech therapy. It upset me, but I'm not really sure why as I already knew that based on his school assessment and the child neurologist assessment. I guess I tricked myself into thinking that he was doing so much better lately on the diet and that maybe he had improved so much he didn't need therapy - it was possible, right? No. We received the written report in the mail and it was noted that both his receptive language skills and expressive language skills were delayed. Additionally, they have concerns regarding his attention and cognition. Sigh. Now we wait to actually have him start attending speech therapy. And, we are still on waiting lists at two places for OT and PT - ugh.
We are in full swing here for summer. I have been back at work full time for 3 weeks now and Chip has been home with the boys. Cole started playing T-Ball and we have been spending the weekends out and about finding new adventures. Tomorrow we are going camping at Belfair State Park for the weekend - the boys are so excited! I am nervous about Joshua's food, but we are only an hour from home if something happens and we need to come back. We are packing everything ahead of time and luckily camping food contains a lot of stuff he can eat (hot dogs, hamburgers, eggs, etc.). We are getting more comfortable with it and so we decided to "go for it" and continue to live our lives. We will see how it goes and I will post some pictures next week. I have also signed both boys up for swim lessons (yes, I said both boys). I found an awesome place that does lessons and they are willing to work with us to ensure Joshua is safe at all times and it is a small pool and Chip will be sitting right there the whole time in case anything happens. He will NEVER be left in the pool without someone holding onto him or him being supported. He is so excited and it feels good not to let Doose take another thing away from him and just let him be a kid. Swim lessons start next Tuesday so I will let you all know how it goes.
I think that brings everyone up to date (for now). I hope everyone had a happy and safe 4th of July. Ours was a bit different due to seizures, naps, diet and my being sick, but we made it through and still had fun.
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