Seizures

Last night just as Junior was finishing his treatments I heard his breathing change. Kind of sounded like he was snorting which can be a sinus /asthma thing or is also what he does in a seizure. I took a close look and sure enough he was in a seizure. Not a typical seizure in fact not like one I have seen before. I did what I typical do for his seizures and put my hand on his chest and talked to him. It didn't work and the seizure increased in intensity. At minute 4 it was time for Diastat and by minute 6 it had done the job and the seizure had nearly stopped. Junior went into a deep sleep, I got him to bed and onto his bipap and he slept until 10am this morning. I hope and pray that was the first and last I see of those type seizures.

Junior is still a bit groggy this morning but is smiling so that is a very good sign. Please pray for no more seizures.

Wind, Wind, Wind

Junior had a tough night last night because of all this wind. He had a lot of congestion and some wheezing which kept us both up.
This morning you would never had known he had gotten almost no sleep. He was full of energy and DEMANDING to go out for a bike ride. The wind was still going so I told him if he wanted to ride he would have to wear one of his big masks(he hates them). Well to my surprised he didn't miss a beat and told me "ya, out". So we got him on his bike with his mask on and headed out.
Then time for some indoor fun.(the pins are up on a little table so he can see them better)
Bowling
Basketball

A Nearly Asthma Free Day At Last

After working so hard at therapy yesterday Junior slept better then he has in weeks. He woke up ready to go and since the weather was finally looking better we got out for a bike ride. He hasn't ridden for awhile because of his asthma so we had to make it kind of short. He didn't mind though and was just happy to be outside on his bike.
Hurry up, I need my hat and shades so we can ride.
Ready to roll.
I have had a couple people ask me about using the lift to get Junior on and off the bike. When we first started using the lift it took a bit to figure out how to maneuver it for his bike. Now we have it down and can get him on and off fairly quickly.
I didn't think to grab the camera until the sling was already under him so this is just the actual lifting him off the bike part.
I attach the lift to the sling, then lift him just a couple inches off the seat(not sure what that funny face is for, he really wasn't upset).
Only 2-3 inches off the seat, any higher and we found his knees got caught on the handle bars as we did the transfer.
Then I just rotate him as I slide him to the side. Just have to be careful to watch his legs so they don't get caught. Also have to especially watch the leg on the side we are moving him to. It can twist if it gets caught on the side of the pedal. He ends up sitting next to his bike in the sling
this was just the getting him off part but putting him on is just the reverse.

Working on his therapy "homework" today. He is supposed to do lots of sitting to work on head control and trunk muscles. You can't tell because of the picture angle but his chest is not touching that bolster. Only his arms are on it and he is pushing with his arms to hold himself up(no back brace). In the pic he realizes I have him facing away from the tv so is trying to turn around.
Determined to turn around to see the tv
Then sitting in a chair, just a regular chair. Ipad games were great to keep him focused on sitting up and keeping his head up so he could see the screen. (he is playing Angry Birds)
This pic shows what he is sitting on(I didn't want to step far enough away to get a pic of the whole chair and him), I was not supporting him at all aside from a touch to his shoulder every so often to help with balance. He also started to tip forward a few times and needed a little help but a few of those times he was able to stiffen his arms and stay upright. He was really trying hard and sat there for over half an hour playing the game with me. We work on sitting regularly but I didn't realize he could sit like that for so long, go Junior.

Wow, a whole day with no wheezing and only a little congestion. Yahoo, for sunshine, I sure hope it sticks around for awhile.
I talked to my mom last night and she is going to come see us for a week before flying home. We are soooooo excited to get to see her. It was way past Junior's bedtime when I was on the phone and I didn't realize he was listening until I heard giggles coming from his room. I walked in and asked him who was coming to see him. His response was a chant of "a-ah, a-ah, a-ah"(grandma, grandma, grandma).

Therapy

Junior had his PT evaluation a couple weeks ago but then his asthma was so bad we couldn't start the therapy. Today was his first session and it went so well. He started with a good stretch then worked on some sitting. He has lots of "homework" to do before next weeks session.

Then it was time to try out the walker and treadmill. We got Junior all set up and in the walker, this walker is so neat. It supports him as much as needed and can be placed over a treadmill(it is called the LiteGait Jr).
The therapist told me she didn't expect to see any muscle activation during this first session and just wanted him to get used to the walker. Well after a few minutes the therapist said that she could feel muscle activation. Wow, woohoo go Junior. He will be working on weight shifting and pushing with his legs over the coming weeks. The goal being getting Junior into a special walker that moves very easily so just him pushing or shifting his weight could move it.
Leaving for therapy this morning, he was looking a little tired but was very excited.
In the walker and looking very serious as he works hard
Junior on a treadmill, wow, I never thought I would see this. I am overjoyed that he is getting this therapy and so proud of him. He is determined to get the most out of life, if only everyone had his attitude.

Today I saw a lot of hope, I saw the possibility that with some work Junior could move himself. No his legs aren't suddenly going to start working, he is not going to "walk" in the typical sense of the word. But that doesn't mean he can't learn to use his legs to help move around. I can't wait to see how Junior does with his therapy.

Happy Easter

We had a quiet Easter this year. I spent some time on the phone with my mom. We shed a few tears as well as some laughs as we talked about my aunt and shared some memories. She was such a special lady and will be missed by many.

Junior had a rough day yesterday and some bumps last night but woke up this morning with a great big smile. He has been smiling and giggling his way through the entire day and I am loving it. Wonderful to have my happy guy back and not see him struggling so much with his asthma. It started to rain a little this morning which did wonders for his asthma and made for a great day.

He got the movie Megamind for his Easter present and thinks it is wonderful. He was watching it for the third time when I told him he had to get up,and could not spend his entire day in bed even on a holiday. Little stinker looked at me and told me "O out" (no, out) and then tried to go back to watching his movie. I told him "No, up" you can watch your movie later. He wasn't happy but decided it was okay when he found out we had some fun things planned.
Watching his new movie
Check out those oxygen levels, and thats on room air.
Now for some pics of my happy boy having some fun.
This first pic is from a couple days ago when he was first working on his bubble wrap painting(you can tell his asthma is bugging him).
Putting butterflies on his painting and deciding he needs a nap
Cat nap is over and now it is egg time
Junior wanted to paint his eggs so we used bubble wrap painting on one, finger painting on another, dot markers, and regular markers.
Not fancy but we had fun

Into God's Arms

I have fought a good fight, I have finished my course, I have kept the faith. (IITimothy 4:7)

This afternoon Aunt Linda's courageous battle with cancer ended. She was surrounded by family as she flew into Jesus arms.
She believed in living her faith and touched so many people during her life.
We love you Aunt Linda and will miss you so very much.

Please keep my Uncle and family in your prayers over the difficult days to come.

Hypertonic Saline

Junior has had a rough time the past several weeks with illnesses and severe asthma. At his last pulmonology appointment we discussed a plan of action to deal with this changing asthma and try to get things under control. We decided to give Hypertonic Saline a try. It is typically used with children who have Cystic Fybrosis but is now being used with those who have other lung issues as well. Where normal inhaled saline is 0.9% , Hypertonic Saline has 7%(also available in other strengths). It breaks up the mucous and also causes coughing. After Junior's first treatment nothing happened and I thought it wasn't going to work. A couple hours later he started coughing and was clearing huge amounts of mucous. That continued for about the first 36 hours and now he is sounding a lot better. His oxygen need dropped dramatically, he was on only a tiny amount last night and hasn't needed any today. This certainly isn't going to fix his asthma but helping keep his lungs clear is a huge help.

Poor guy is not having a happy day. The weather is changing yet again and he is struggling with a sinus headache and of course his asthma. He was having fun, giggling and trying to sing to his Beach Boys music, this morning(Yes, my 12 year old absolutely loves the Beach Boys music) but when the clouds started moving in and it got windy he started struggling. Now he just wants to sit with me and watch his movies. Hopefully he will feel better and be up to coloring some Easter eggs later this evening.

Thank you to those praying for my aunt and family. She is surrounded by family and friends and is at peace. I spoke to my mom and she said there has been a constant stream of people coming in to see Linda. Though there are many tears and sad moments it is also truly amazing to see the many people who have been impacted by her life, she has lived her faith in a big way. Please continue to pray for peace and comfort in the coming hours/days.

Smile

The smile that makes my day. So glad to see that smile several times yesterday. Asthma was still a big struggle but Junior was a much happier guy. I think a big part of that was because though he was gunky he was not wheezing and didn't need his oxygen much of the day.
The clouds were moving in during the night and Junior has been extremely gunky this morning. His oxygen levels are actually okay and think if it will actually go ahead and rain he will feel much better. Clean some of that pollen out of the air and help with the pressure.

Please continue to keep my aunt and family in your prayers. My mom made it safely to Oregon and is now by her sisters side along with her other siblings and family. My aunt is surrounded by love.

Pulmonology Appointment

Sunday evening Junior thought we needed a little extra fun and started running a fever. A little Motrin took care of it and it didn't come back but his asthma showed up big time. He was in his bipap sleeping but was wheezing loudly and his airway was starting to constrict. I didn't want to take off the bipap so put his neb into the bipap circuit. His nebulizer machine doesn't have the power to do this so we used a Y connector to put two oxygen tanks together. That did it(running a tank at 6 liters is perfect but our tanks regulator only goes to 5 liters) and doing the neb while on bipap really helped push those meds deep in his lungs. Had to get up a a few times to do this, goodness I hope the pollen and weather change go away in a hurry.
Monday morning we headed to the pulmo office. At this point it looks like the fever was just a reaction to the impending asthma episode. It is clear his asthma has changed so we spent quite a bit of time talking about a new plan. If we can get insurance approval we will be trying Hypertonic Saline with him. This is a nebulizer treatment that helps loosen the mucous in his lungs and also irritates the lungs to make him cough. She is also having us try a nasal spray since Junior has started snorting quite a bit when he breathes. She suspects it is a sinus thing and he is having some drainage causing irritation. We also discussed using an IPV for nebulizer treatments but will first see how the Hypertonic Saline works for him.
Not sure whats in the air this year but it seems everyone(even in other states) is having an extra hard time with their asthma.
Please continue to keep Junior in your prayers as we work to figure out the best plan to deal with his asthma.

Asthma GO AWAY!!!!!

This constant weather changing means continual asthma issues for Junior. Today started out okay but just about the time Junior got into his stander for some painting time the asthma hit. So instead of painting he napped and had a neb. Later he started to look a bit concerned and was breathing hard, I could sense that we could be headed for a bad episode. I turned on his favorite music(Beach Boys) and then worked on keeping him calm until the nebs kicked in.
He is doing better this evening and just on a little oxygen.

All set up to paint but instead sleeping
He was wheezing in his sleep so I put him on his bipap and a neb.
Treatment time, that is his "treatment tent". His mucomyst is awful stuff and gets a sticky film on things and ruins our airpurifiers. I have been replacing the dvd player every 2-3 months because of it. So I rigged this up to try and keep that mist contained. It is just a cloth shower curtained hanging over a pvc frame and extended from his lift motor. Junior thinks it is very cool to have his treatments in his tent.
Junior is having a very sleepy day
TV time
My project earlier this week, getting summer close adapted.

Please keep my aunt and family in your prayers. My aunt has been fighting a truly courageous fight against cancer and is nearly to the end of her battle. She will soon be flying into Jesus arms in heaven. Though we know she will be free from pain and suffering we are all going to miss her so much.
Keep my mom in your prayers as well as she travels to be with my aunt this week.

Still Alive

We are still here I just haven't had much time to post lately. Junior finished his antibiotic yesterday and is also off of his prednisone now. Poor guy has been very moody the past few days but that can happen if he has been on prednisone awhile and then comes off of it. Our weather just keeps on changing and of course the pollen count is high this time of year so we are fighting that asthma.
Junior may be super moody but he is still sharing plenty of smiles. Hopefully in another day or two he will have adjusted and be back to his happy, giggly self.

Tuesday night Junior has his sleep study to figure out the settings for the new AVAPS machine. Please be praying that it goes smoothly and Junior will be able to sleep long enough for them to get the info they need. The hope is that all goes smoothly and we can get the machine before camp in June. Thanks to some wonderful folks taking care of the funding, we will be attending the Joni and Friends camp this summer. This camp is specifically for families with a disabled family member. We are so excited and Junior can't wait to go.

Therapy At Last

Today Junior went for a PT evaluation in Sacramento. We have been trying for years to get regular PT and finally it is being started. Such a huge blessing.
Junior started the eval in tears and was very stressed over being in a new situation. Pretty soon he warmed up and was soon charming them with his smiles. The therapist was so good with him and he was even trying to show off for her. She had him on his tummy and asked me if he could get his head any further up. Before I even answered he was pushing up as hard as he could. Having the therapist talk to him and treat him like any other kid his age made a big difference in his behavior towards her. Instead of shutting down he wanted to show her what he could do and was even answering her questions. She also made it clear that she thought we could certainly make progress and was giving me ideas for things to do at home. Before we left she asked him if he would mind coming back to "play" and he gave her a big yes. This clinic was sparkling clean and had some awesome equipment. Junior will go for therapy once a week.
The only issue we are going to have is that the therapy clinic is nearly an hour from our house. With the price of gas going up so quickly this is going to be a challenge.
I am so excited to see how things go and how Junior does with regular therapy.

Asthma Attack Anxiety

This evening Junior was watching tv and started crying and getting very upset. He wouldn't calm down until I grabbed his ipad and let him tell me what he needed. He told me "I need a treatment".
I was kind of surprised because he sounded and looked fine. I grabbed the stethoscope to listen closer and could then hear a few wheezes in his lungs. I started his nebulizer and he was then happily back to watching his movie.
This is the third time since the bad Monday night broncho-spasm episode that he has gotten extremely upset and wanted his nebulizer turned on. One of those times I did hear the beginnings of the broncho spasm type wheezing like he had on Monday(caught it early and it did not become an issue).
This kind of over the top reaction shows how badly the asthma attack last week scared him. The type wheezing I was hearing tonight would not have typically caused him any stress, lung issues are part of life. Makes me sad to see him react in this way and see the fear on his face.
Please pray that I can find just the right way to help him work through this and that his anxiety won't end up causing an asthma attack.

For those who have experience with broncho-spasms(asthma attacks) in their children what have you found works best for treatment(we currently have Atrovent and Xopenex). Also have you found a good way to help your child cope with anxiety related to such an incident.

Junior and I have had a nice relaxing day today. Tomorrow he sees the GI for a checkup and we get to see if he has grown much.

Happy

Junior having some fun yesterday. I only took him outside for a few minutes but he was so excited and it made his day.
Playing in his soap foam, you can't see them but there are cars, frogs, and bouncy balls in the foam.

Yesterday evening Junior was sitting with me in his recliner watching tv. He started getting very agitated and couldn't get comfortable. This was how he had behaved on Monday night before the really bad episode where he had the broncho spasm. I started watching his breathing closely and within a few minutes I was hearing some "squeaks" mixed in with his crying and breathing. So thankful he was sitting with me when it happened so I was able to get him on a nebulizer treatment quickly. We caught it early enough to prevent a scary episode but I sure hated seeing it again at all.

Now for some good news.
We got word last week that Junior has gotten approval for therapy. Not just assessments but weekly therapy, so thankful to Dr. H for helping this happen. Please pray that the first session on Tuesday will go well and the therapist will see Junior's potential and want to help him reach it.

I had a comment asking about the straps we use on Junior's hands so he can color. Here is the link for the post on our Adaptions blog that shares how to make them.

Smiles

Junior slept all night last night and woke up with a huge smile. He then looked at his window and requested(demanded) I open the curtains for him. What a difference a day can make. Wednesday night he hardly slept at all and was tired and cranky much of yesterday.
Hopefully today will continue to go well.
He is now looking out his window and wanting to go outside so badly. With him recovering from being ill and dealing with so much asthma I am very reluctant to take him out. I think I will take him out on the porch for a very short time just to allow him to get out of the house and get a little sunshine. Sometimes you just need to get outside and it is beautiful outside.

Years ago the speech therapy folks told us that if a child is not speaking by around 6 years old then they would never talk. Over the years I have seen many children who proved that wrong and didn't even say their first words until closer to 10. Because of Junior's high palate there are many sounds he absolutely cannot make and many words that sound the same to those who aren't around him often. BUT, he is talking and recently his speech has made some huge leaps.
Last night I put him to bed and he wanted his curtain open. He looked at the curtain and said "Heidi out"(his way of asking me to open the curtain). Now he has said my name as well as the word out for a long time. The difference here is that he did not say his usual hIIEE for my name but clearly said Heidi with every sound clear. Also he is using language sooooo much more often now and typically with no prompting. I am hearing more distinct sounds when he is attempting speech. Junior has almost completely replaced his YES eye gaze with a verbal "ya" and is now replacing his No eye gave "O" much of the time(he uses the eye gaze if I or some else isn't understanding him). When we got the ipad I thought of it as a way to give him a voice I really didn't expect it to get him to use the voice he already has. He still uses the ipad a lot but much of the time first tries to verbally get his point across before using it.
Best of all he is sharing his voice with others and even "talking" at doctors appointments. I am getting some totally amazed reactions from those that have known him for years but he had never actually shared his ability to communicate in front of them. My heart was jumping with joy when a doctor made the remark that they couldn't believe how well he communicates(a doctor we have been seeing for nearly 10 years but who had never seen Junior really show his abilities). I know Junior will never talk like a typical child but his ability to communicate at all is truly a miracle.

I will post Junior smile pictures later today. Now it is time to go have some fun with Mr. Happy. Praying for the good weather to continue and Junior to have an awesome weekend with no more asthma.

Keeping Things Exciting

There is never a lack of excitement around here. Whether the fun type or scary type there is always something going on. Monday night we had a little of the not so good excitement when we were introduced to a totally new asthma experience. Junior has always had asthma troubles but his asthma has never been the typical type. With him asthma means he gets super gunky and may have a few wheezes. Monday evening he was fussing and crying and I noticed it didn't sound right. Pretty soon he was making a whistling sound and looking very scared. I got a nebulizer treatment started but it wasn't working because he was too upset to allow it to get into his lungs. I finally got right down in his face and told him he was going to be okay but needed to look at me and breathe with me. He then calmed enough to get a couple breathes of med into his lungs and things started to relax.
Scary and something totally new for him so Tuesday morning I was on the phone with the doctor and then went and saw her. She checked him out but wanted him to see pulmo before deciding on a plan of action. I didn't expect to get in with Pulmo until the following day so we headed home only to get a call(just as we walked in the door) to bring him on in. They told me he had a bronch-spasm and it could very well happen again. We hope it was a one time thing brought on by a combination of trying to recover from illness, weather change, and high pollen count but asthma can change over the years so this could be a new component. They gave us Atrovent(an anti-spasmodic) to give at the first sign of issues so hopefully that will help.
Junior seems to be doing much better as far as the illness is concerned and is needing very little oxygen. The antibiotic and prednisone are really messing with his system. Along with the typical tummy aches they are causing an increase in his seizure activity and he is having a lot of muscle twitches. Poor guy is not getting a whole lot of sleep because of this. Yesterday his arm was twitching/jerking and he go upset and was hollering "O out"(No out). I am hoping the neuro will have some suggestions to help with this until he is off the added meds.

To say the least we are just a little tired and hopefully today will be a nice boring day.

Tough Weekend But Still Smiling

Weather changing and trying to get over being sick has made for a rough weekend. Junior's asthma kicked in pretty badly on Thursday and with him already being sick it made for one very congested, wheezy guy.
He spent much of Thursday and Friday on bipap as well as a few hours yesterday. Today has been better and he has not needed his bipap except while sleeping. I have even seen quite a few smiles and giggles today. Hopefully the weather will stay stable so Junior can get over this without any more asthma flare ups.
Snoozing during tummy time, he prefers laying on his tummy if his asthma is bothering him.
Giggly boy today(you can see his puffy, red asthma eyes, he is also on prednisone which causes him to have a puffy face)

Not Feeling Well Again

We saw the ped on Wednesday and she gave us a script for antibiotics to keep on hand just in case. At that point his oxygen needs weren't too bad and we were still hoping it was just asthma. That night his oxygen needs increased and I had to give him a dose of prednisone. Thursday I spoke to the peds office and we made the decision to start the antibiotics. His oxygen needs continue to be increased and he is wheezing and very congested. Yesterday he spent several hours during the day on his bipap and that helped with his breathing.
Praying today we will see him turn a corner and get to feeling better.