Long Time

Oh my goodness how long has it been? Again, I am so sorry it has taken me so long to keep you guys in the loop with everything that has been going on with our family and especially with Seth. I am just going to list the major things that have happened since the last post which was just about 2 years ago. OUCH!!! I am really bad at this but it can only get better from here right?

While we were in Disneyland Mike and I had this weird feeling that we just needed to come home early. We came home and decided to let Seth stay his full stay and we would pick him up Sunday because I had a basketball hall of fame celebration to go to. That night I got a call from the Ryan House that seths oxygen was really low and they called 911 and were taking him to PCH. He was actually in status and ended up lasting 2 hours. 
 

January 2015 we were told that Seth had something called Laryngomalacia and that he needs a trach. We decided against the trach. Our Pulmonologist said that our ENT Dr. Page might be able to do a surgery that might help for a little while and help keep his airway open. We saw Dr. Page in Feb. and decided that we would have the surgery and see how long it would help or if it would help at all. 

March 16th we did the surgery at Cardons

April 2015 was an extremely rough month for our family and we learned a lot about life and love and trusting in God even when nothing makes sense at all. (Sweet Scottlyn Calla Rose we miss you like crazy!)

June, Greg and Hailey got MARRIED and Seth turned 6. I can't believe my little guy is already six. 

July we got an email from Rio Swim Club offering Sydney a competitive team spot and she really wanted to do it. She swims two night a week from 6-7:30 and a huge increase in swim meets. We have done one team travel so far to Yuma and she had a blast. She has improved on her times for all of her strokes and also made it to regionals this year. She loves it and the girls she swims with are all sweet girls and she has made a lot of new friends.

August is a pretty big birthday month for us. Seth started 1st grade and we also went to Fake Palm Springs over my birthday as well as Mike's.

September Seth had his big hip surgery. They went in and cut out some of his femur bone and angled the ball of the hip back into socket and put in some plates and screws to hold it. It was a big deal but he rocked it out. The surgery was Friday and we were able to go home Sunday evening. He was on some pretty heavy pain meds and couldn't go back to school until he was off of them during the day. He had to keep his legs in a pillow wedge for 6 weeks day and night and then after that it was just at night. Finding things to keep him entertained during the day was the hardest thing and changing his diaper. I felt at times that we were parents to a newborn and hadn't a clue how to change a diaper. 

November Sydney turned 9 on the 12th and had a joint party with Lorelai. She hasn't had a party since she turned 5 and it just so happened it was a joint party with Lorelai as well. They had a party with a game truck. The girls had so much fun.

December Ember, my sweet littlest turned 5 and since we had a big FROZEN party for her last year we just had a fun day. She has wanted an american girl doll forever so we decided we would take her to the American Girl store and then out to lunch with her doll. She had a blast!


Vacation to Disneyland

February we were going to go to Chicago with the girls but with something came up with family and where we were staying so we decided to take the girls to Disneyland because we already had Seth staying at the Ryan House. So on the 3rd we got all of Seth's stuff together and I took him down to the Ryan House and since it was already late I got him all ready for bed and he fell asleep instantly. It was a lot easier to leave knowing he was fast asleep. Here is a picture of him all tucked in and fast asleep, not sure if you can see him but he's in there. 


The next morning we got the car packed up and ready to go and went down to the Ryan House before heading to CA. We had to drop off his reflux medicine and of course had to give him a few extra kisses. 

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It was a pretty nice drive with not much complaining from the girls. They got to watch their movies and eat lots of snacks. We only did one stop on the way in Palm Springs. We went to Walmart and got some food for the hotel as well as snacks for while we were at Disneyland. We also forgot a stroller for Em so we got cheap umbrella stroller because there is absolutely no way I am going to hold her the whole time. We got to the hotel in time for some dinner and they played a little bit and then went to bed. 

Wednesday we got up nice and early and headed down to breakfast. The hotel we stayed at had a hot breakfast included so we stuffed ourselves and made the girls eat as much as they could and went and waited for the shuttle to take us to the Park. The girls were so excited and Em just kept mentioning how much she wanted to see Elsa and Anna. 

Once we got our tickets and got into the park we only had access to main street because the actual park/rides don't open until 9am. So we got ourselves a drink and headed to the area of fantasy land so we could try and get in line to see Elsa and Anna. When they opened the area everyone ran into the area and of course by the time we got to the line for Frozen Characters it was already beyond the 2 hour wait and honestly we would have spent so much time in the line rather than enjoying the rest of the park so we figured we would try again the next morning. So with little amounts of tears from Emmy I was able to take her away from the area and head to the carousel and teacups. 

It wasn't very crowded at all which was really nice and when we go back again we will make sure to do it around Feb again it was so nice to not wait more than 10-15 min for a ride. The teacups that morning hardly had a line and we were able to just get right back on again which is a good thing because I think we ended up riding it 4 times in a row, everything was spinning for me :) I honestly do have anymore pictures from that first day which is making me quite sad. We went and did space mountain, rockets, space tours, pirates, jungle cruise, Indiana Jones, and haunted mansion. Then decided to head over to California Adventure and went straight to cars land and got to go on some of those rides which was nice cause the times we have gone before the wait at cars land was insane and this time we got on in about 10 min. We also did the litter mermaid which is my favorite. Ember was too little for soarin so Sydney and I did it and then Mike got to go next (rider swap- so you all enter the ride and tell the worker that you want to swap and then one adult goes while the other waits with the kids and then when they are done you can switch.) Since Sydney can ride she got to do it twice. We also watched the parade in California Adventure and also went to the Disney Jr. show which both girls LOVED. They got to see Mickey Mouse Club House and Doc McStuffins. We then went back over to disney because Mike wanted to go on the Haunted Mansion, his favorite ride. The girls are scared of this one plus it was already dark and it would have freaked them out some more so I stayed behind with them and got them some snacksThe girls had so much fun and I love being there with them. They get so excited to see everything. We stayed as long as they could handle and then went back to the hotel ate some dinner and the girls crashed.

Thursday morning we got up again bright and early and stuffed our faces with breakfast and headed to Disney. We got there and once again headed straight to meet Elsa and Anna and once again the line was already past the 2 hour mark and by the time we got into line we heard others talking and they said that about where we were in line we were looking at 3-4 hours so needless to say we decided not to wait in the line. I think if we had my parents with us and my mom had a book to read she would have totally stood in line for us and we could have taken the girls on some rides and then been able to come back. So Mike wanted to do star tours again so he took Sydney and I took Em on the rockets which she always loves and then it started raining. The one thing that we really didn't plan for was rain. Em had a jacket that was pretty much perfect but Sydney only had a zip up sweatshirt and I only had my hoodie. At that point we decided to go and meet the princesses. It was about an hour wait but it was covered and Ember was so excited. She got to meet Ariel, Cinderella, and Aurora. She was in heaven and got them to sign her book. The rain finally stopped so we headed over and did autotopia. Around this time Mike and I were talking about what we wanted to do tomorrow (Friday). We were planning on spending one more day at Disney and then Saturday going to the aquarium and driving home Sunday, but Mike had this weird feeling that we should just go home Friday. I was not too excited about heading home but yet didn't fight it at all. We already got two incredible days at Disney with no long waits and literally got to ride all the rides. When we got back to our hotel Mike called to see if we could get our money back (we went through Get Away Today) and they said they would give us a refund after we checked out. So Friday morning we packed up and ate as much breakfast and headed home. The girls were sad but for some reason Mike and I just felt like we needed to be home and on Saturday there was this induction into the hall of fame for my high school basketball team that I decided I should go to since we were going to be home. We decided to let Seth stay at the Ryan house like planned until Sunday and the girls and Mike were going to come with me to the induction into the hall of fame. 

It was a wonderful time away and we always LOVE going to Disneyland. You literally go and think about nothing else but the magical day you are having. My girls need that sometimes and so do I and Mike. I really do want to bring Seth sometime. He has gone twice but he was way too little. The first time he was 8 weeks old and the second time he was 6 months old and very sick probably with RSV :) it was an insane trip and I want him to have fun riding some of the rides and just enjoying himself. So if we do take him I think it will just me Mike and I and Seth without the girls. Anyways until next time.

Surgery

I just wanted to write a quick blog post about Seth and his recent surgeries. In November we had scheduled his leg surgery for Jan 17th. In early December we met with our neurologist and asked her what she thought about the VNS and she thought we should do it because Seth will always have epilepsy so if we get the VNS and he can actually get off some medicine that could be really good for him. So Mike and I talked about it and we thought well if we could just do both surgeries at the same time that would be ideal because in the past when he goes under anesthesia he tends to have more seizures and so we thought one less time under would be better. So we contacted his neurosurgeon that would be placing the VNS and asked if they could both be done at the same time. We got word in January that both surgeons agreed to do them at the same time. 

The surgeries that he got done were:
1. gastrocnemius recession. Seth's brain tells him it is normal to point his toes. He has been doing this since he was born and over time it has shortened his leg muscles to the point where it is extremely difficult for him to get to 90 degrees. So for the surgery they made an incision in the back of his leg by his calf and went in and lengthened the gastrocnemius muscle so that he can get his foot to 90 degrees. This will make it easier for him to get into his AFO's and hopefully standing. He will be in casts for 4 to 5 weeks.

2. Vagus Nerve Stimulator. They basically inserted a device (like a pacemaker for the brain) on the left side of his chest right below his collarbone. It is set to send mild pulses of electrical energy to the brain every 5 minutes for 30 seconds. This is the lowest setting. When we see his neurologist in early Feb she will set it a little stronger. They will work up to the amp and duration that they think is needed for him. Click here for more information.

He was scheduled for the leg surgery first at 10 but it was moved back to 10:30 and then the Neurosurgeon was next with the VNS. He was in surgery for a little over 3 hours and then we got to go and see him in recovery. We were told we were for sure staying the night but both doctors said that he was okay to go home that day. It took him a really long time to come out of the anesthesia, I mean a really long time. He was still completely out of it driving home.

Both Surgeries went the best they could and we will go back to see the Neurosurgeon for a check up in Feb and we will see his orthopedic in 4 to 5 weeks to get the casts off. Here are a few pictures from friday.


Way behind...watch out its a long one!

I will try my best to get you guys all caught up. I have been really bad about updating all of this so I will do my best. They last time I updated  was when Seth was in the hospital with RSV so I am going to do my best to get you guys caught up. (side note: Right after the hospital stay in Feb for RSV he qualified with the state for nursing. So he gets 32 hours a week of nursing which has been amazing. It took us a while to find a nurse but we found her and she is amazing.)

April 2013: We had an appointment with his neurologist April 11th and we started two new medicines (ONFI and Neurontin) Onfi is a new medicine which is suppose to be amazing for those that have lennox gastout and the Neurontin we are trying because of the constant head banging.  

  • April 24 he went to bed that night completely dry and then remained dry until 3:30 the next day (25th) when we put him in the bathtub to try and get him to go to the bathroom. 
  • April 26th was the same thing as the 25th. So we got him in to see his urologist. They told us it was called neurological urinary retention and that this happens sometimes with kids that have neurological issues. But just to be safe because he has had so many kidney issues in the past they did an ultrasound to check his kidneys and bladder. Everything came back no different than his last ultrasounds. So they showed me how to give him a catheter if he hasn't gone to the bathroom for more than 12 hours. 

May 2013: 

  • May 2nd I was thinking more about his urine retention and I felt that he should randomly at almost 4 not be able to go to the bathroom. So I decided to email his neurologist and see what she thinks about it. I got an email right back and she said that ONFI can actually cause urine retention in some kids. She wanted me to keep watching him for a few more days and see if it continues.
  • May 13th Dr. Jarrar called and we have decided to come off the ONFI because of the urine retention and start him on TOPAMAX. We have tried this drug when seth was really little and it came in a capsule and you had to sprinkle it on his food and feed it to him. He was not a good eater and couldn't figure out how to swallow it so after a while of trying it we had to come off it. So Dr. Jarrar wanted to give that medicine another shot since he now has a gtube. 
  • The rest of May we were coming off the ONFI and raising his Topamax and in the meantime he was still having a lot of seizures. School was calling me to come get him cause he was so cranky and out of it after he had them.  
  • May 30th was his last day of preschool and he actually had a really good day. Thank goodness! Here is a picture of Seth getting his award from his favorite teacher Mrs. Kasey. 

June 2013:  The beginning of June was rough we had a few days with lots of seizures and still the medicine was not helping.

  • June 5th he had a seizure during speech therapy that lasted 5 min and we had to give him his emergency medicine to help him come out of it. We emailed our neurologist and she wants us to change his night time dose of Keppra so we did that.
  • June 3rd we had an appointment with Dr. Adelson a neurosurgeon to talk about getting Seth a VNS (Vegus Nerve Stimulator) the surgery for the VNS was scheduled for July 25th
  • June 12th we had a really rough day he had 5 seizures within an hour. 8:40am-8:50am-9:00am-9:20am-9:35am. I emailed his neurologist and told her what was going on. She emailed right away and told us to increase both am and pm dose of Topamax to 100mg. (FROM THIS MOMENT ON WE HAVE NOT SEEN A GRAND MAL SEIZURE) 
  • June 17th started what we call nights from HELL. Seth was sleeping less and less and we had no idea what was going on. It started out with Seth waking up at 1:30 and then going back to bed to the next night waking up at 10:30-1:30-4:30 and this continued and Mike and I were just getting less and less sleep.  While Seth was not sleeping he would hit his head and face over and over again until he would cry and then he would do it again because he was so upset. I emailed Dr. Jarrar to let her know about his sleeping and head banging but the issue was that she was on vacation in Jordan. So the only way to communicate with her was through email and we would just hope the other was up.
  • June 22nd SETH TURNED 4!!! I can not believe he is already 4 years old, what a special little boy he is and he is such a goofball. 

  • July 24th After his birthday the head banging continued and it just got worse and worse. Sleeping at night just wasn't happening. He went to bed at 7pm was up at 1:30am and never went back to sleep. When I finally got him up for the morning he had bruising on his face from hitting himself. We decided to order elbow braces so that he could not hit himself at night. We had no idea what else to do. We were so excited that the seizures were gone but the lack of sleep was making us crazy. Mike and I actually said we would rather a seizure and more sleep and yet we knew we did not want the seizures. 
  •  I emailed Dr. Jarrar the sleeping was getting so bad that he would just hit himself while he can't sleep. She did not want to change too many meds while she was out of the country so she just had us increase his neurontin and we were scheduled to see her the day she got back into her office which was JULY 10TH This helped for the night of the 25th but on the 26th he still woke up looking absolutley horrible. I felt so bad for him.  Up until our appointment with Dr. Jarrar he still didn't sleep but we did get the elbow braces in the mail on the 27th and he wore those every night until we saw her July 10th so that he would not keep hurting himself. Here is his face at its worst: 

 

July 2013: 

  •  July 8th he started summer school and he absolutely LOVED it and had a great time. He had no problems and he lasted all day. We were so happy to hear that and we believe that he was having such a hard time during school was because of the seizures. 
  •  July 10th we finally got into Dr. Jarrar and the first thing she asked was how the seizures were. We were so happy to say that he is seizure free but he was not sleeping. The medicine Topamax does cause insomnia which now makes perfect sense. As soon as he started that medicine he quit sleeping. I felt much better knowing that the medicine was causing it and that it wasn't something that we were going to have to live with forever. So Dr. Jarrar decided to give him a sleep medicine called Amitriptyline which should help him stay asleep. Dr. Jarrar mentioned that this might still be the honeymoon stage from the topamax and that the seizures might creep back in we are just not sure when. We have decided to stay on the diet for a few more months to see if he remains seizure free. The next question we had for her was, since he is now seizure free do we continue with the VNS Surgery? She said no. Lets see how long he goes without seizures and if they come back we can get back on the schedule for the VNS surgery. So that is exactly what we did.
  • During all of this he was also fighting a gtube infection and was started on augmentin for antibiotic. But the infection came back positive for pseudomonas and he needed another antibiotic to treat it. This continued to go on until July 29th when I took him into Dr. Leavitt and he said that Seth needed IV antibiotics to treat it. They called into PCH and got a bed ready for him and we stayed from July 29th-August 1st. We left on a new oral antibiotic and to follow up with our gtube surgeon in a few weeks.

August: 

  • August 14th He had his first day of school. He is now in the 4's class at Foundation For Blind Children and his teacher is Mrs. Jean.  I almost forgot to take some pictures of his first day so he was not the happiest at the moment cause he was tired but at least I got a few.

This gets everyone completely caught up until our Palm Springs trip two weeks ago. I am pleased to update that Seth is still seizure free. The next post I will get you guys completely caught up. Until next time!!! 

Getting Caught up...

Christmas Program:

Seths school, Foundation For the Blind had a christmas program and they did the 15 days of Christmas and Seth was in charge of the lights. He had to hit a switch to make the lights turn on and it was so so cute to watch him hit the switch and turn the lights on all by himself. After the program they had food for everyone and then Santa came so the kiddos could get pictures with him. Seth wasn't in the greatest mood but I made him get one with Santa anyways . 

Christmas:

We had about 3 weeks off for Christmas break and he did get sick once during the break but it wasnt too bad. We had a wonderful Christmas and Seth and the girls got spoiled with their Christmas gifts. 

Neurologist Appt:

We met with Seths new neurologist January 31st and we decided that in about 3 months we would go off the diet. In the meantime we added a new medicine and took one out. The new medicine seems to be helping a little but we still have not gotten onto his full dose yet. We are suppose to increase it each week until he is on 10mg AM and PM right now he is only on 5mg AM and PM. We have really taken our time with the new medicine because he was in the hospital due to RSV and then he just has taken a really long time to recover from it. 

RSV:

Thursday night after his neurologist appointment we noticed that he was just really congested and struggling to breath so we knew that he was coming down with something and decided to clear him out the best we could and give him some saline. He was up all night coughing but besides that he was doing okay. Friday was the same way but more congested and still up all night coughing. Saturday was a different story. By saturday evening he was retracting quite a bit and really congested. So I decided to take him to phoenix childrens urgent care where they checked him out and took him to the breathing area. They started him with an IV and did a deep suction and then did two breathing treatments and he still was not keeping his oxygen levels up and still retracting so they decided they want him to go to the hospital. So the ambulance came by and took him to PCH while I waited for Mike to bring me my clothes and then I headed down there. When I got there they already had him in a triage room and were doing some suctioning and they did a nasal swab to see what was going on with him and they also had him on quite a bit of oxygen. After about 30mins and a few x-rays the nasal culture came back positive for RSV. The mucus was so think that he just couldn't cough it up and it was so thick in his upper airways that he couldn't breathe through his nose. Finally they got us a room and started him on breathing treatments every 4 hours. 

Seth was in the hospital Feb 2-8th and honestly it was a really long time for me too. Friday when we finally go the okay to go home for the doctor and his pulmonologist we were so excited and Seth was so ready to go home. We now started treatments of albuterol and pulmocort morning and night and they ordered vest therapy as well so we  were just waiting on insurance to see what they would cover and then wait for it to arrive. After being home about a week we got his vest and he absolutely loves it. He laughs everytime he is in it which always makes it so much easier for us to do it because of how much he enjoys it. 

His first day back to school after RSV was valentines day and he got to play on the jiggle table and use his switch. It is his favorite thing. Here is a video of his cute self pressing the switch everytime the table shut off. When he presses it he starts to jiggle again. He is so stinkin cute!

Since RSV Seth has been off and on with some colds and school has just been really hard. He went from loving school to really just having a rough time. I honestly think it is the class size but there is nothing that we can do about that. He has been hitting his head way more than normal. Normally he would do it if he was bored or bugged but now he is doing it all the time even with his favorite things. He had a really good week last week and then he got the stomach bug and was puking all day friday and then sat/sun/mon/tues/wed/thurs we have been dealing with diarrhea. We started him on a probiotic but he is in a tricky situation with the diet he is on and trying to keep his ketones where they should be. Needless to say he has been pretty cranky since Friday but last night (wednesday) we got a full nights sleep which is the first in almost a week.