Thoughts, Fears, and Eternity.

I see little boys that are Seth's age and I have a hard time. They are running around at the park, fighting with their siblings, eating solid foods without gagging, talking all the time, coloring on walls with markers, cutting their own hair, making a huge mess while they play in the sink, or saying "mommy I love you." I'm sure it's jealously cause it is wanting something that I do not have or can't have but yet at the same time it hurts and it is hard. Life is hard!

It is hard to think that I might not see Seth stand up on his own, or walk down the hallway, or eat food off his plate, or say "I love you", or play sports. I try not to focus on these thoughts but at night when everyone else is asleep I have these thoughts. The worst one I have is that if I go to sleep and I miss something happening to my little boy and I wake up in the morning and something happened. That's what keeps me awake.

I know God is in control and He has our days already numbered and everything is for His glory...I just need to constantly remind myself that what I know trumps what I feel and that God is glorified and God will take care of my family and my little boy! God is the most perfect Father and I am just blessed that He calls me his daughter. I didn't do anything to deserve His grace but He gave it to me. God Has Seth right where He needs to be and He has me where I'm suppose to be. I'm not going to lie, it's hard and sometimes it sucks, but eternity FOREVER awaits for me and one day I can call that my home!

GI Appointment

So it has been a while since I have posted. We have gone to the urgent care again with Seth last Monday and he got a new steroid and an inhaler with a chamber. He does okay with it but he really hates it. He has been hitting his head a lot lately and only on one side and the tantrums that he has been throwing are CRAZY so we have an appointment with his neurologist on May 6th so maybe we will get a few things answered. 

Last Wednesday we had an appointment with our GI doctor and they decided that my precious little muffin needs a g-tube. When we got there they weighed him and he gained 2 POUNDS in 3 months!!! That is HUGE and awesome...but it did not solve the g-tube issue because he still has trouble with the whole swallowing/aspirating. The doctor thinking that the pneumonia eventually will take him and would rather get the g-tube and use that as a safety net.  We have an appointment with the surgeon on May 11th and we also need to do another barium swallow study. It will tell us what he is able to handle and what we will have to put in the g-tube. We know for sure all his meds will have to go into the g-tube but we are not sure about his bottles. I would LOVE to still be able to feed him and only use the g-tube for meds and if he gets sicks just some extra fluids. So if you think of it you could pray that we would still be able to feed him his pediasure through the bottle and not a g-tube. 

This whole g-tube has been really hard on me. I really do not want him to have to go through this and another surgery. Seth does not deserve this...he deserves way better than this. Watching him in feeding therapy and how much he really does not enjoy eating food and just how hard it is for him to just even figure it out and swallow the food and breathe at the same time. I hate what CMV did it him. I know that I should not think this way but sometimes my thoughts just go there. I wish I could take away all that he has to go through. I would get a g-tube and never swallow food again so that my little boy could. 

Seth has been really cranky lately and normally he is such a happy boy. I hate seeing him not happy and that something is bothering him. We have an appointment with his neurologist May 6th so praying that we might get some answers as to what is going on.

We had a great Easter and I need to get the pictures off my camera and onto my computer so the next post will be Easter and family fun. I hope that everyone had an amazing Easter!

ARISE MY LOVE

Not a word was heard at the tomb that day.

Just shuffling of soldiers feet as they guarded the grave.

One day, two days, three days had past.

Could it be that Jesus breathed his last?

Could it be that his Father had forsaken him?

Turned his back on his son, dispising our sin.

Oh hell seemed to whisper, "Just forget it, He's dead."

Then the Father looked down to his son and he said..

Arise, My love.

Arise, My love.

The grave no longer has a hold on you

No more death sting

No more suffering

Arise...Arise...my love.

The Earth trembled and the tomb began to shake, and like lightening from Heaven

The stone was rolled away. 

And this dead man the guards they all stood there in fright

As the power of love displayed its might

And suddenly a melody filled the air

Riding wings of wind, it was everywhere

The words of creation had been longing to hear.

The sweet sound of victory, so loud and clear.

Arise, my love. 

Arise, my love.

The grave no longer has a hold on you.

No more death sting no more suffering

Arise...arise....

Sin, where are your shackles?

Death, where is your sting?

Hell; has been defeated. The grave will not hold, the king.

Arise, my love.

Arise, my love.

Arise....Arise....Arise 

FUNDS FOR SETH!

So we have a new blog for our little muffin Seth. It is a blog for fund raising and to also let everyone know how things are coming along and of course how Seth is doing. Please if you get a chance go and check it out and follow us as we travel on this journey to do the very best for our little boy. Seth is a precious gift from God and deserves the best so please check it out!

http://fundsforseth.blogspot.com/

The kiddos.

Its been a while since I have uploaded some pictures from my camera onto my computer so I decided I would put some on the blog. These are from February and March, enjoy :)

She is the craziest girl I know but man I love her!

Ember trying out the bumbo

Sydney LOVES her sister!

Trying to sit in the bumbo and well she was actually able to get her little bottom in there.

First time with pneumonia (Feb 27th) he was able to keep his o2 stats up so we did not have to get admitted he was able to just come home after some IV antibiotics.

He decided he wanted the play-mat on top of him and he had so much fun doing it!

She is so funny! Only Sydney would walk around the house in just her undies and a helmet!

Sweet girl

We got Sydney some money jars and let her paint them and we have decided that we would start giving her a chance to earn some money and start understanding how it works. So we have decided that she will get 4 dollars every time we get paid and she will keep 2 dollars and 1 dollar will go into savings and 1 dollar with go into giving. Once she builds up enough we will open her up a savings account. She had so much fun painting them and she wanted me to paint one of them so I did but I was really proud of myself in that I did not help her at ALL with the two that she painted!

Ember Noelle @ almost 4 months 

(April 1st she will be 4 months) time sure goes by fast!

How can you not fall in love with this face???

She sure knows how to make us smile!

Out of all her toys on her "fun land" she wanted to play with the cup holders the most. 

Sweet muffin Seth at 21 months (on my gosh he is almost 2 years old)

24 hours...

I hate when doctors say you can't leave until you have been off oxygen for 24 hours. I understand why but I just hate the comment, I've heard it too much in the past 21 months.

Saturday afternoon was totally normal and we all seemed to be on the mend but around 4:30pm we noticed some retraction while Seth as breathing. By 5:30 we decided that I should take him to the urgent care and make sure he's still not struggling with pneumonia. So I headed out to phoenix children's urgent care and before I left the house I called to see how long the wait was and they said only 15 min. And sure enough I only waited 10-15 minutes until I got called back. We first went into the room and after they checked his breathing we had to go to the respiratory room. He was put on the o2 stats monitor and sure enough he was not keeping his o2 saturation high enough. He was keeping it at 88 and they would like it 94 or higher. So they did a breathing treatment then an X-ray and then another treatment and by this time his stats were at 85 so they told us that they were going to have to admit him either to Banner Cardons or PCH. We waited for the ambulance and his X-rays to come back and around 9:30 the ambulance arrived and they picked up Seth and I followed behind because I needed to get my car to the hospital. It was so hard to not ride with Seth. I hate leaving him by himself.
I got to Cardons and went straight to register him and then waited for us to get a triage room. Once we got in triage our nurse came in ( she is a tough one and rude in some ways but you can't help but like her) anyways she hooked him up and I decided to ask if there was anyway we were going home and she laughed and asked is he always on oxygen?" I said no and she replied with a "nope absolutely not." she decided before turning on the o2 to see if he could handle himself and he dropped right away to 87 but she left it for a good few minutes to see if he would bring it back up but he didn't so he was put on the o2. We waited in the triage room till 3:12am until the told us we finally had a room.

After we got the room and I got Seth to sleep I had to head home and get all his meds because one of them they are not allowed to give because of all the FDA rules so I had to make sure I had that to give to him in the morning. I got back to the room around 4:30am and he just woke up so I made him a bottle with some of his meds and then he went back to sleep around 5am and I was able to sleep till about 7am and then the day started. Mike came down around one so that Sydney and I could go and have lunch with my grandma and Archie, my parents, and Steven-Caitie-Averie. My grandma and Archie go back to South Dakota every summer and so we wanted to see them before they go back. After that I went back to the hospital and Mike and I got to spend some time with Seth before he went back and got the girls from my parents. Mike left at about 6:30 and got the girls all ready for bed and I just stayed at the hospital with Seth. He was having a few short seizures before Mike left to go home but around 8:30 I was making his meds and I heard his o2 machine beeping and I walked over to him and saw his whole body just convulsing and then looked at the o2 monitor and say he was at 74 then he went to 48 and thats when I opened the door and called to the nurse that he was seizing and came back in the room and he was at 22. It was so scary he was not breathing and going blue around the lips. At that point there were 5 nurses in the room one ran to get his emergency med and the other putting the o2 mask on him and another one suctioning out his mouth so he does not choke on anything. I have never seen him like that before and I really would never want to see that again if I do not have to. I had no idea what to expect and if things were going to be ok. I have no idea how long the actual seizure was because he was having it before I even looked at him but from the time I noticed it until it stopped was about 4 min. and after he came out of it his o2 levels came back up pretty quickly and I think it helped that he was already on o2.

Monday was pretty uneventful. Mike stayed at the hospital with Seth and I stayed home with the girls and got the house in some order. Tuesday the girls went over to Lisa's and she watched them all day for us! THANKS SO MUCH!!! They had taken him off o2 Tuesday morning and during his nap he kept going down too low like 86 and thats when the doctor came in and put him back on o2 and said that he needs to stay another night. Mike stayed again with Seth another night and finally on Wednesday we were able to bring our boy home as long as we got him into the doc Thursday or Friday. We have to give him breathing treatments every 4 hours even through the night for the next 30 days and then we got a steroid (Pulmicort) and he gets that twice a day for 16 days and then once a day for the next three months. We went into our pediatrician Thursday and got a referral for a pulmonologist for Seth and we see him April 11, he has just been having too many lung issues to not see one. We also have another appointment with our gastro doc on April 20th and sometime in April we have to get another swallow study done.

Monday April 4th we take him to get fitted for his wheelchair so he should be getting one soon and we got in with Foundation for the Blind and have a meeting with them in the next few weeks. I am just waiting for them to schedule a home visit. I have heard great things about the guy that is coming to the house to see him.

If you think of it pray that we can stay out of the hospital with Seth he is still retracting a little and we are still right on track with his treatments so we would just really like to stay out of the hospital if we can.

Here are some pictures from the hospital stay but they are not the best quality because they were taken with my phone and not my actual camera but it was have to work :)

Sunday Morning having some down time.

Hanging with Daddy

Playing in a chair with his favorite piano

He decided he no longer needed his o2 on and took matters into his own hands.

Welcome To Holland.

Welcome To Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” ” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely hings …about Holland.

Lately...

So the past few weeks we have been fighting colds and croup going around. The girls got croup but Seth's cough has not turned into that and I am praying it stays that way.

This past month we have had a few doctors appointments. 

We had a ear appointment where they checked to see if the tubes were still in place and they also cleaned out one of his ears because he has had many ear infections in that ear. They looks at the results from his last ABR and he confirmed that his hearing is perfect and that it should not go away. He will see us back in 4 months. This was a huge thing for me because he has been messing with his ears a lot and I was just worried that something was going on but it is just something that he does.

We had an appointment with CRS at St. Joseph where they did a full body pediatric exam on him to see what services he qualifies for. We were there for a really long time. The doc wanted all of Seth's information from pregnancy to birth to NICU to now. He qualifies for a handicap sign for the car he will have an orthopedic doc here and then all of his other doctors are part of CRS so we will see them all at St Joseph when we need to. They got me a prescription for pediasure which is a huge thing because it was starting to cost a lot of money and since that is the only thing he eats consistently it was getting quite expensive. He will also need to go to a wheelchair clinic and get fitted for one. I still have to call to schedule that one. March 4th he goes back to CRS for an ERG (eternal retinal gram) to check his eyes because of the seizure meds he is on.

We also met with his neurologist because his seizures are still happening quite often. Dr Bernes said to stay on the 4 meds that he is already on because the sabril is helping but we also got the okay to give him an emergency drug if he is having a lot of them during the day. We actually have had to do this about 5 times so far because he maybe had 30 within an hour. 

PT has mentioned getting him a SPIO suit so we got the script from his pediatrician and got it into the ortho and we are just waiting on it. Also we are looking at getting him a stander which could take a while to get because she has to write a letter to the state on why he needs it. I get so frustrated with special needs equipment because of how expensive it is. I would love to get him this rocker that he would fall in LOVE with but it is about 2,000 dollars and we just do not have that kind of money or even special needs beds are anywhere from 1,000-7,000 dollars and thats just for him to sleep on and be safe. You would think for special needs kids they would know that you life is full of expenses that they would help in that area or the state would just make things easier but they don't. 

I have had a hard few days with Seth and just trying to comprehend what our future will look like and there is really no way to do this but if I really think about it we have a long road ahead of us and lots of laughter, tears, and PRAYERS!