Happy Easter

I hope everyone is having a blessed Easter.  He is risen indeed.

This has not been the Easter we had planned but I know God's hand is in this and He has a purpose even in our trials.  We did not make it to church and instead of Easter things I am doing laundry  and just put a pot of soup on the stove while I keep a close eye on Junior.

Yesterday Junior slept in late and then woke up and went right into a seizure.  With the big storm moving in I knew this might happen so had been watching for any seizure signs.  Poor guy bit his tongue while having the seizure so added to the extra saliva his seizures create it was a mess. He then slept a few more hours on his bipap and seemed to be recovering quite well.  Then late in the afternoon the seizure monster reappeared and did its best to stick around.   It was a long seizure and took his heavy duty emergency med to stop it, something I haven't had to give in at least a year(probably closer to two).  One of those times when 5 minutes felt like 5 hours, when your child is seizing it is as if time has stopped, every moment seems like an eternity.   He was chewing on his tongue during this seizure so of course we had more blood which made it that much worse.  Once the seizure finally stopped I got his bipap on him along with his vest, nebulizer, and extra oxygen. I also grabbed his "go" bag and put it by the door in case the seizures started back and we needed to head to the hospital. Soon after the seizure a huge storm hit and we had thunder, lightning, and heavy rain.  This is not something that is common where we live so it could have been the cause for the seizures.  I pray that is the case and nothing else is going on. 
He is a very tired guy today and is getting lots of extra treatments.  Because of all the blood yesterday, when he bit his tongue, I am watching for any signs that he may have aspirated.  He has a low grade fever now but that is common for him after a seizure so I am not going to get too stressed about it yet.   We will talk to his doctor tomorrow to see how to proceed. 
Please keep him in your prayers. 

In between seizures yesterday I was working on some onesie t-shirts for Junior.  He needs an undershirt under his back brace and regular undershirts ride up get wrinkled under the brace causing red marks.  A blogger friend shared her onesie t-shirt idea and I love it.  It was perfect for Junior.
I linked to her tutorial and shared how I made Juniors on the adaptions blog.

  

Junior was awake for a little while this afternoon so enjoyed checking out his Easter stuff.  He was still pretty out of it and just wanted to hold his car and go back to watching I Love Lucy.  

Happy Birthday

Sending many, many hugs and Happy Birthday wishes to my "baby" brother today.  I can't believe he is now 20, how is that even possible.  I remember when he was born thinking " when he is 20 I will be --, wow I will be old"(I guess that means I am now officially old).  Have an amazing birthday Andrew, we love you and are so proud of the Godly young man you have become.  I can't wait to see what the rest of life's journey brings you.
Andrew is nearing the end of his second year at West Point Military Academy in New York.  Though it isn't easy he is doing very well and not backing down from the challenges each day holds. 

 

This weather is keeping things interesting and Junior has been going from happy to melting regularly.  He wanted to decorate eggs while in his stander then 5 minutes in and he was done.  Last night things improved so we did some good exercise and Junior got in his standing sling.  We did lots of walking and he was one worn out kid by bedtime.

Please continue to keep Abby in your prayers.  She saw the specialist today and will be having surgery on her knee as soon as school is out. 

Coloring Eggs

Junior decided that even though the weather was making him sleepy he still wanted to color eggs.
We were putting the color tablets in the mugs and Junior thought we needed to add two colors together.  We discovered that the color tablets don't mix even if you stir them well.  The eggs we added to that mug came out orange on one end and red on the other.  Junior decided they are his favorites and can't wait to add Spiderman stickers to them after they are dry.

Falling Behind

Wow, I just realized it has been several days since my last post. 
The weather has continued to constantly change which keeps things exciting.  One minute Junior is great and the next he is telling me his head hurts and asking for treatments and oxygen. 
Abigail is still having trouble with her knee and the doctor doesn't want her back at school until they get test results.  She went back to the docs yesterday and had an MRI today, they should know something tomorrow.  Well got a call while I was typing this and she has a torn ACL so will see a specialist asap to determine the next step.  Please keep her in your prayers. 
Junior is enjoying having her hang out with him, even if neither of them are up to much. 

I finally got teacher Cindee's blanket made and Junior thought he needed to try it out before she came to pick it up.  He now thinks he needs one, it is so soft.

 Junior last night near midnight, he decided he wasn't in the mood for sleep.

I was contacted by Junior's supply company today and told they will no longer be able to take his insurance.  So now I scramble to get supplies set up with a new company and pray his cough assist comes in before the 1st of April.  If not we have to start all over with getting approval.  I am very frustrated but know it will all work out and am trying not to stress too much. 

Allergies and a Sprained Knee

Today was not the greatest of days.  We have bad wind and added to the pollen it has made for some nasty allergies.  Junior isn't terribly congested but has been complaining that his head and chest hurt and he just wants to rest.  Abigail is also having a rough time though hers is for a different reason.  She sprained her knee badly while playing soccer earlier in the week and has been out of school the past two days.  Today she was here with us so her mom could go to work.  She is in quite a bit of pain, can't get up by herself, and is using crutches.
It has been a day full of I Love Lucy shows, and relaxing(well relaxing for the kids anyway).  Praying tomorrow is a much better day. 

Watching tv today, they are quite the pair.

   

This is from yesterday afternoon when Junior was playing with his army jeep.


I was having fun playing with my picture program. 

 

 

Appointments & Smiles

Yesterday Junior struggled with his asthma as he tried to recover from his seizure.  He was very quiet and not up to much.  He had some fever in the evening which wasn't all that unexpected since it seems to be his pattern with weather change and seizures.
A bumpy night last night but today he has been much better. He has been in a great mood, lots of smiles, and less oxygen.

This morning we headed to Sacramento to see his neurologist. All is well and his seizures are fairly controlled(for Junior).  He is having some break through seizures but they are all being triggered by weather or illness.  The big issue is his lungs reaction to his seizures.  He goes into broncho spasm which leads to major breathing issues.  After talking to the doctor we decided to try adding something else to our after seizure protocol and see if it helps.  He suggested caffeine.  He thinks it will help with the broncho spasms and keep Junior from going into such a deep sleep which makes the situation with the broncho spasms even worse.  So Junior will get half of a cup of coffee or tea after his next seizure.

A very happy kid after getting home from the doctor today.
 
This afternoon before starting Junior's treatments I was seeing if one of his favorite shows was on tv.  He used to love to watch the Lone Ranger but we hadn't been able to find it on tv for awhile.  Today I happened upon an episode playing and Junior was sooooo excited.  Clearly he still loves it. 

Someone has decided he doesn't want to go to bed tonight.  It is far more fun to hang out on his mat with Spidey, play with his cars, and watch tv. 

 

Easter Egg Fun

Junior had a nice quiet weekend and we spent some time on Sunday decorating his tree with eggs and other Easter things. He thought it was very cool.

Junior with all the decorations for his tree

 Easter tree

With all this Easter stuff around I decided to add some Easter fun to his school work.
 I posted about how I made this Eggucational activity over on the Adaptions Blog click HERE to check it out.
Here is Junior's sensory table full of Easter grass and eggs.

 Spiderman was one of this months reading words.  He had to "find" an egg and then match the word inside to the picture on his ipad.  I was not helping him read the word, I just showed it to him and then asked him to show me the picture that went with the word.

  

Finding sheep on his ipad after finding the word in the egg.

 
Easter egg silliness.

This afternoon and evening the weather changed quickly and Junior started complaining of a headache and that his chest hurt.  A little later a seizure hit, ugh, I hate how these big weather changes trigger seizures. He is now sound asleep on his bipap and recovering.

Junior's Port

I did a post awhile back sharing about Junior's port and how it is accessed.  Up until now it has always been accessed by a RN that came out to the house.  I kept meaning to get a note from his doctor so I could be trained to do it but just hadn't gotten around to it.  I was also a little nervous about sticking my child with a needle.  Needles are just not my thing.  I decided it was time to learn though and overcome my fear.    This will prevent a need for a trip to the hospital if the nurse isn't available to come out or we are out of town when a port flush is needed(flushes have to be done once a month and then when labs are done).  Also it will keep him from ending up with black and blue arms if he needs emergency labs.

We don't ever want to have this happen again.  This pic was after his last labs that we had to have done at a lab a couple months ago.
 

I finally got the note from his doctor and took the plunge.  The RN came out and walked me through it.  I had seen it done so many times that it was really not a big deal.  It was more my getting past the nervousness and fear of putting that needle in.  Junior made it easy since he sat and laughed at me the whole time.  He is usually very serious when the nurse comes out and does it but with me he thought it was quite funny.  Even when I was putting in the needle he grinned at me. 
Never thought I would be learning to stick my child with a needle but happy that I can now do it myself. 

Today we went to see Junior's doctor because he had a bit of blood in his ear.  I suspected it was from coughing too hard but still thought we should get it checked.  The coughing was the culprit and Junior is fine.  He is now relaxing and watching Scooby-Doo.

My project for the evening.  We are finding that Junior definitely needs his weighted blanket to help with seizure activity.  The one I made him for Christmas is made out of flannel which is already way too hot for him.  I can't believe it is mid March and we have all our fans on trying to avoid turning on the air conditioning.  I just finished making him a weighted blanket out of much lighter weight material.  I also made it slightly lighter in overall weight and spread the weight out a bit more to try and keep it cooler.

Have a great weekend everyone. 

Visiting Friends

Yesterday we headed to Auburn to see our very good friend Barbara and her family for a few hours.  Her daughter Michelle is getting ready to have trach surgery(actually it is taking place as I type this).  We were helping her get all the medical supplies organized before all the new trach supplies and equipment arrive. 
Junior loved having another day out which did not include any doctors visits.  He and Abby watched shows and listened to music during the drive. Junior then had a great time laughing at us and also watching Scooby-doo. 

Junior and Abby goofing around in the car

 Junior enjoying some Scooby-Doo while we are working. 

Please keep Michelle in your prayers. 

A Surprise Outing

We got up early to go to Auburn this morning but at the very last moment things got rescheduled.  We were already packed up and ready to head out the door, the weather was gorgeous, so we decided to head for the zoo.  Sometimes spur of the moment plans are the best.  We all had a great time and though I was nervous about how Junior would handle being outside with the pollen, he did awesome.  No real lung problems and we have seen no ill effects since getting home either.  He of course was exhausted and napped with his bipap on for several hours but then again so did Abby(well no bipap for her).
 We all loved getting out in the sunshine and enjoying a "fun" outing for the first time in several months.   Being Monday morning there were very few people and I didn't have to worry about Junior picking up any new illnesses. 

There was of course a whole lot of silliness going on.  

 

 

 What's your wingspan?  This is something the kids always want to do when we visit the zoo.

 Junior's favorite animal, he absolutely loves giraffes. 

 Checking out all the other animals.  Notice the frown in the bottom corner picture.  They are in front of the chimp enclosure and Junior can not stand orangutans, chimps, or gorillas.  He gets very nervous when we get near them. Though he will tolerate them now when he was younger he would even cry and refuse to look if we got near them. 

 Abigail the croc warrior, yes Junior thought she was hysterical.

 Another of Junior's favorite animals is the red panda.  As you can see we saw a lot of sleeping animals.  I guess we were there during nap time.

 The flamingos, not a favorite of Junior but at least he will sit and watch them now.  When he was younger he wouldn't even look at them and got upset if we got near them. 

 The reptile house, another spot that Junior loves at the zoo.

  

This ostrich had us all laughing.  For some reason it found Junior quite interesting.  Every time we got within sight of the enclosure it would come running on over and get as close as it could.  At first I thought it was just anyone coming up but quickly noticed it ignored others and kept coming over to where Junior was. 

 A little memory picture.  When the kids were younger this was a favorite stop whenever we were at the zoo.  We had to stop for a picture when we were walking by. 

Two exhausted kids this afternoon.  Junior had his treatments as soon as we got home and a few minutes later they were both sound asleep.  I have no idea how Abigail could sleep like that but I guess when you are tired anything works.

Gluten Free - Update

Tomorrow Junior hits the 2 week mark for being gluten free.  With him being tube fed it was not as hard as I thought it would be.  Really we have not had to make any drastic changes in what he was getting.  I cut out any breads and wheat based cereals as well as a few other grains he is no longer supposed to have.   
I have seen a decrease in Junior's congestion and with the most recent weather change his asthma reaction was greatly reduced(definitely the biggest change I have seen).  I don't want to be too quick to judge his reaction but I pray the gluten is what is helping things and that it will continue. 

We had a little bump in the road a few days ago.  I got a whole roasted chicken at Sam's Club.  I had carefully read the packaging to be sure it was okay to give him.  Well I added a slice of it to his overnight feeding and by the next morning his congestion had increased(he also told me his tummy hurt).  Since it was the only different thing I had given him I suspected it was the culprit.  The following night I of course didn't give him any and gave him some chicken I had grilled myself.  Though his extra congestion didn't immediately go away it was a lot better by late the next day and no more tummy aches. 
Clearly something that had been added to the roasted chicken had some form of gluten in it even though it was not listed on the package.  Looks like I need to stick with foods I prepare completely myself and not risk buying anything prepared at a store. 

We are having a quiet, relaxing Sunday.  Tomorrow Junior and I will head up to Auburn to visit with a friend and help her get some things organized for new medical equipment her daughter is going to need.  Please be praying for our friend Barbara and her daughter Michelle.  Michelle is having trach surgery on Wednesday.  

Some School Time Fun

Junior has had several good days and though the weather keeps changing he hasn't had any asthma trouble.  He has even gone nearly 36 hours without any oxygen.  That is something that happens in the summer but this time of year with the weather changing it is unheard of. 
 It has been very nice to get back to at least part of our routine.  Junior has been feeling good enough for some school work and his other activities.

Today he got up in his standing sling and had a great time doing his school work.  Letting him do his school in the "snow" made for a totally focused kid who didn't complain once about having to work. 

Math time, he was using cars in the snow to do addition and subtraction facts(his workbook page is what is clipped on the side of the table).

 Writing his new reading words in the snow(the words also go with his history lesson)

After finishing his school work and spending a few minutes just playing in the snow I took off his knee splints.  The knee splints make him put more weight on his legs so it is much like when he is in his stander.  With the knee splints off I help him walk back and forth across the room several times for some good exercise.  
Ready to do some walking.

When I was stretching Junior and getting him ready to go in his standing sling today I had some music playing(K-Love).  This boy loves music and loves to sing along with it.  His very high palate makes it hard for him to make many vocalizations but he does his best and certainly makes a joyful noise to the Lord.  Here is a short video of him singing with all his heart. 

Happy Days

I love seeing Junior with his great big smile again and know  he is feeling so much better.  He is still short on energy but otherwise is back to his happy self.
Yesterday he did great, even got some school work done and didn't need  his oxygen until late in the afternoon.  Today he needed a little bipap time while taking a nap but it is after five pm and he has still not needed oxygen.  The really strange thing is that the weather is changing and he still has shown no signs of asthma trouble.  Praying hard that continues.

Working on his school yesterday.  The pictures where he is building something are from his history lesson.  He was making a trading post/fort. 

 A couple nights ago Junior's teacher brought the apple box to him and last night she dropped off her ipad.  She is loaning it to us so we can try out the apple box since Junior's ipad(from the school) has not yet arrived(the apple box will not work with the ipad 1 which we have).  She had his favorite firefighter apps on her ipad so Junior was one happy dude watching all firefighter videos on the big screen.  We also tried out a game and it was so nice for him to be able to push on the screen to play but still see what he was doing up on the tv.  

 Game time, playing Gobble Gators

The apple box is perfect for Junior because it allows him to see the ipad screen(on the tv screen) while also touching the screen(kind of allows the ipad to work as a switch with some apps). We can do hand over hand writing words when working on reading as well as many other educational activities.  After just using this just one time I am so impressed and see many, many ways it is going to help Junior.  Now can't wait to get his new ipad.

This afternoon during his nap, such totally perfect numbers and still no oxygen. 

 Tonight I tried making gluten free bread for the first time.  I used coconut flour and made orange pecan bread.  It turned out really good and now I am excited to try some other gluten free recipes.  Junior can even have one of these mini loaves in his blend tomorrow.