Hunter 2 days before he got his Wings...

Gosh do we miss him here with us! But we know he is perfect and we will see him again sometime... I hope that everyone had a wonderful Christmas.

XOXO,
Samantha

Cutest skunk ever!

 Hunter from his 1st and only Halloween with us. We miss you little man...

Hope everyone has a happy and safe Halloween!

Isaacson's

Had to share these...

Daddy, Mommy & Hunter's hands



Mommy & her "sunshine"




Papa holding "baby bear"




Grandma Isaacson, mooching on him...




Daddy holding his "Big man"



Hunter opening his gift at his 1st birthday party

Meemaw & the best baby ever!

We miss you little man!!!!

slide shows

Here are three slide shows of pictures that were shown at his viewing and funeral thought that we would share.


http://animoto.com/play/By9Kabgu062bPDw9VgC1JQ

http://animoto.com/play/STSufr4yf9SlxNpsxqkoWw

http://animoto.com/play/WyXHv6z7LOv2iwecIYkpWQ

Nick and I are hanging in there but I will have to stay this is going to be a long road that we will travel together. I seen a road sign over the weekend that said "Holland" and I said to Nick I wish that we were back in Holland again. We are missing him, no matter what it took to take care of him it did not matter to us as long as he was still here we would do it all over again. Nick and I still catch our selves thinking the way we did before, like when I go to the store I will catch myself thinking was there some thing I needed to get for Hunter? Or on my way home do I need to run to the pharmacy for more meds? Or we look at the clock for Hunter's med time or feeding time. Nick catches himself reaching back in his truck to check on Hunter and then it hits him like a ton of bricks he's not there...I went to a store the other day and was checking out and the lady asked me if I had any kids (I know she did not know?) but it still made my heart drop to the bottom of my stomach, that my son is no longer with us. We are hurting, but taking it one day at a time and trying to stay busy.

One day at a time...Enjoy the slide-shows.

Love,
The Isaacson's

Arrangements

Funeral arrangements for Hunter Nicholas Isaacson: Visitation Thursday, July 7, 2011, 4-9 pm at Chapel Hill Mortuary Cedar Hill, MO. Funeral Service Friday, July 8, 2011, 11 am at St. Martin's UCC in Dittmer. Gravesite Service at Chapel Hill Mortuary immediately following.

Our "Angel"

Turn for the worst...

Well things again took a turn for the worst...Hunter had a pretty bad weekend and just did not seem to be comfortable. Nick and I talked and we decided that we needed to make a call on Monday. I had Nick call his Wings doctor to talk to her about the comfort meds since Hunter is having difficulties breathing and needing more and more O2. He is losing more control of his throat and it seems that this is were he will stay again, going back to his underlying diagnosis that is progressing. So Hunter will be given 2 types of comfort meds as needed. He will be seen Tuesday by one of his Wings RN's to check on him. I emailed his two main doctors to let them know what is going on with Hunter (Dr. Weisenburg & Dr. Smyser) they emailed us back and agreed with the Wings Team that this is the best for him to keep him comfortable, they were both deeply sorry and keeping us in there thoughts. I also let them know about the seizures not getting any better and I asked them again if they have been in touch with the Doctors doing the research and they said that they are going to talk with them today and call us sometime tomorrow afternoon to talk more about options for the control of the seizures and to let us know what they hear from the research doctors if anything???

So as for now we are still in Holland were we want to stay for as long as possible, but all we can do now is keep holding him, loving him, and doing all that we can for him. He is our "Angel" sent from above!!!

Please keep Hunter in your thoughts and prayers...

Love,

The Isaacson's

He is one of the BEST!

Hunter has one of the best dad's in the world!

Ever since Hunter came along it was love at first site, I remember him telling me that he never thought that he would love this little guy as much as he does (this was right after we had him and he was in the first NICU) This dad is strong, caring, loving & patient.

He has been through things that no dad should have to go through... 

I can honestly can say that we do not know where we would be today without him, he has had to make some very hard decisions with me and keep me strong throughout this past year.

We love you!!!

Love, Sam, Gabby & Hunter

Not what we wanted to hear

Hunter was seen by Wings today and what they told us was really not what we wanted to hear, but we both knew that this was coming... Let me just say first we so hope that they are wrong and he will prove them wrong! But no matter what this is God's will not ours and he is in charge. I talked to the RN on my way home and then once I got home with Hunter his doctor called from Wings also. The day started with Hunter laboring to breath again and needing some O2, I called the RN and she was on her way to his Grandma's house to check him out. When she arrived he was breathing much better on the O2, then she and one of the other RN's thought that we might want to try some Pepcid for (possible reflux issue) they are not sure but this will be another trial and error situation if it does not help we will stop using it. So in talking with both of them on separate occasions, they are thinking that this is his underlying diagnoses progressively getting worse and this is probably where he will stay till it progresses even more until...(something I don't want to think about or say!) The Wings doctor asked me if we were comfortable managing him at home or coming into the hospital, I told her we would rather be at home with him where he is comfortable and so are we and we also have the O2, monitor to check the heart rate and his O2 & the suctioning machine to keep him even more comfortable at home. She also said that if this does progress more we may want to consider some things for him to keep him comfortable.

I never would have thought in a million years before I had him that I would be having to decide what to do for my 16 month old to keep him comfortable before....I thought that I would be teaching him how to say words, teaching him to walk and get dirty like little boys do, riding in the tractor with Papa at the farm. But that is not what God had planned for him and that is okay he is perfect in every way and he has taught us patients, love, to not be selfish, and that we can overcome whatever is thrown at us. We are also a lot closer to God since he has come along, it is not that we weren't believers it's just now we see his work and that we are also doing his work with Hunter.

We were meant to have this little angel that God blessed us with!!!

Again we are hoping that they are wrong and he will prove it and get through this soon and get back to his old self. But we still have to remember that this is not our plan and this is out of our hands and in Gods hands no matter what we love him and will cherish every moment we have with him, we could not imagine our lives without him even with all of his challenges he has, we still get those little grins every now and then from him that make us so happy to see...So gorgeous!

Please keep our little angel in your prayers.


Love,
The Isaacson's

He's my son...

This is a song that Nick and I relate to in our life with Hunter. If you have a moment please click the link below to listen, some of you may have already heard this one (warning have a tissue ready).
http://youtu.be/VgEDOOOi2r4

P.S. Hunter is still not feeling well and has been running a temp again today, so we will be going to Children's to see his Wings doctor to see if she can shed any light on what this might be.

XOXO,
The Isaacson's

Swan Farm Pictures

This is how we spent our Saturday afternoon at a Swan Farm it was absolutly gorgeous and the pictures will show how gorgeous! I also have to say a BIG Thanks to the family that owns the farm for letting us come see it and spend the afternoon there.

Feeling a little hopeless?

I know that sounds bad coming from us, but today's appointment with Hunter's doctor after we left that is just the way that we felt. We started off the appointment talking about Hunter's seizures and how he has been having more & more and it just seems that the new med has not been doing the job on controlling them along with all the other meds. In the midst of all of us talking Hunter fell fast asleep, then we went onto some other options to control his seizures.


(Here's the list)

1.Go up on the Febotal (new med) again.

2.Surgery to put a med into his body that calms the nerves (to be totally honest can't remember the name because all I heard was "surgery" and it made me freak out! Because of what happened the last time he had surgery. Well the odds on this working for him are not very good & it could take up to a year or more for us to see any results from it "if any"!

3.Keto diet - that we have already decided not to do because all the risk with it & from what we have heard from other families & some other good sources of ours.

4.More meds! His doctor also said that the more meds we add the lesser his chances of seizure control.

So can I say we are feeling a little hopeless on getting his seizure fully under control.

Okay so you know how we told you that Hunter fell fast asleep while we were all talking about are limited options on seizure control. The doctor wanted to take a peek at him & and make sure that everything else on the little guy looked good. Well....Hunter woke straight into a pretty rough seizure in front of her and it went on for a good 3 - 3 1/2 minutes and we ended up having to give him his ER drug (doctors orders) because she explained to us that what he was having was a cluster of seizures it started with his lock up type then onto mouth the movements then into him throwing himself forward better known as infantile spasms. We are glad that he had the seizure in front of her so she could explain that this was not just one seizure but this was multiple.

We also had no new news on all the research that they have been doing but she said that she was going to contact them this week to see if they have anything more to tell us.

All we can do now is love him and do all that we can for him to make sure that he is comfortable and happy! No matter what he is the best thing that has ever happened to us and he is such a blessing we are also still very blessed to have him still here with us.

Love,

The Isaacson's

Had to post both!

These are 2 little video clips of Hunter playing with his V-tech laptop "one of his favorite toys" to some it may be simple for them to touch a button and they figure it out pretty fast on how to play with it, but with
Hunter this took a lot practice learning how to push the buttons to make it play music. Hunter since his 1st birthday has been learning how to play with this toy that makes him very happy and he usually plays with it every night.
The reason I had to post both was one is pretty good and you can see how he hits the buttons and the other one is just too dang cute because he gave the biggest smile right in the camera, sorry I am a proud mama that loves this little man and those smiles that he gives just make me melt!
Enjoy the little video clips, also sorry I am not to good at holding the camera still.

Adorable Hunter



Sporting new PJ's




Taking over Daddy's recliner!



Showing some teeth



He was Mr. Sleepy head on Sunday afternoon.

She is amazing!!!

This is Gabby singing at her school in Fox Idol, there was just one small technical error in the beginning. All I wanted to yell was TURN THE MIC ON YOU bleep! (At the technical guy...LOL) She again was just amazing tonight and we are so very proud of her. Please enjoy the video, courtesy of her Daddy. 

Long time no blog

Wow I used to be better at updating, need to get back with it!!! But it just seems with all my daily duties work, bills, taking care of the house, dog, husband..LOL, and lets not forget what takes up most of my time when I get home taking care of the little man (Best baby in the world in our eyes), so blogging just has not been at the top of my list. Man time has just been a flying Hunter will be 15 months coming up & little miss Gabby is 9 now speaking of the little miss she will be in Fox Idol at her school coming up we are very proud of her that she made it she will be singing "Colors of the wind" from the Pocahontis Disney movie she is such a goof ball we asked her to sing it for us and she was totally nervous and did not want to do it, we asked her why not and she told us because she knows us and those people will be strangers we talked her into it and she sang for us all I can say is WOW she will do amazing out there I'm so freaken emotional these days so of course while she is singing it I had tears and it was so cool to see how Hunter was responding to her while she sang all he wanted to do was see her he kept trying to move his head towards her. Again we are so PROUD of her!!!
Onto the little man he has been doing pretty good for the most part (we are crossing our fingers) that he keeps going in this direction we are almost off of the Kepra completely excited & nervous at the same time! But hey one less med we have to give him. He now has 4 little toofers and oh man watch yours fingers he bites hard...LOL!
Well I better stop blabbing and get back to my duties before bed time. I hope that everyone had a great Easter!

Love,
The Isaacson's

Check out this post...

http://babyhenderson.blogspot.com/

Guaranteed to get a good laugh! Wow some people would try and sell anything!

By the way Hunter has been doing okay? All the blood test results have came back fine, but we are still having issues with him going potty!!! We are still not too sure what is going on there? He got a new haircut and he is looking quite hansom, but he already was before...of course!
We are still taking a day at a time because we are sure going through some ups and downs...He is going to be 14 months here soon time is still flying!

Hope everyone has a great weekend!

The Isaacson's

Not so good...

This week and weekend has been pretty rough for the little man!


He has been needing a lot more suctioning and his seizures have been the same. Friday his Wings RN came out to see him and said that he sounded and looked great...well that turned for the worse in a matter of hours he started running a little fever that night and looked like he was not feeling to well Nick was up with him half the night suctioning him out, I woke up with them early that morning and he still was not doing the greatest. The whole day yesterday he slept, so he was asleep for about a straight 14 hours he finally woke up fully around 9 PM last night then I took his temp and it was around 99.3 gave him some Tylenol and the rest of his meds and about another hour later he was out again.
Not only were we having those issues he only peed twice yesterday...UGH my stress level is pretty high!!!
Okay this morning I woke up to hear him breathing pretty hard I get him suctioned out and he was doing a little better, next I checked his temp and it was 100.9...UGH again raise that stress level a little higher. Gave him some Tylenol and he went to sleep. I called the Wings RN and she said to cut back on his fluids because his tummy maybe getting to full and it maybe coming up and going into his lungs...ok more stress and confusion??? I guess I am confused because he is not peeing and we are cutting back fluids? I will do as she says but that does not mean that I have to like it?
Hoping that this day gets a little better and we don't end up back at Children's, but if have to we will...Because we will do anything for this little man!!!

Please keep Hunter in your thoughts and prayers...thank you!

The Isaacson's

Little prayer request...

Please keep this little guy Zane in your prayers! http://www.caringbridge.org/visit/zanetreguboff
Zane is having a rough time right now.
Thank you!!!

By the way Hunter had a not so bad day he had 3 seizures today, but hopefully we will get some answers tomorrow on "what is next" when I call his doctor???

XOXO,
The Isaacson's

Cutest smiles :)

L@zy Sund@y

Update

Okay what a day!!! We went to Children's today and delivered all the toys that were donated (thank you all again!!!)


So we have some more news from the Doctor's working on Hunter's case.

We were given an article about 2 boys comparable to Hunter (this is not the boy and girl in Chicago) One of the boys is from the Netherlands and he is 2, similarities to Hunter the spots, seizures that are not controlled, g-tube fed, cortical eye impairment, brain and head size. But here are the non-comparable cleft palate, fingers and toes abnormalities (did not form right while in womb) & bony facial structure.

The other boy was from New Mexico, USA unfortunately this boy passed away at 17 months (that was very hard to hear!) He had about the same similarities as the boy from the Netherlands.

One things that I did not mention was that all of these children including the ones in Chicago all have traches. See Hunter does not and like we have decided in the past that this will not be an option for Hunter, we don't believe that he could make it through another surgery.

Hunter's Doctors are hopeful that we will hear something by this summer in result to all the research being done.

To us that was promising!!!

Also Hunter maybe having more seizures than we know b/c while we were sitting there Hunter was doing his normal movements and the Doctor was saying that is probably seizure activity.

One good thing is that we are taking him off the Kepra (that will take 7 weeks to wean him off of though) but we are adding the Felbamate this one he will have to be closely monitored on for Liver failure and Anemia, so he will have weekly blood draws for awhile.

Okay enough of my ramblings and off to doing my nightly duties!

Hope everyone has a great Friday!!!!

Good night,
The Isaacson's

Hunter in the bath...

Hunter is a sneek in the bath tub, he likes too move his little butt down in the chair and he sucks the water like a straw...I don't let him do it too long just for fear of aspirating. But it totally cracks us up when he does it! See somewhat of an example below...



Hunter's 1st Birthday party

Hunter's Birthday Day

Hunter's awesome new hat from Meemaw

He was very tired by the time we all got home, but I am sure he was ready for his cupcake!

Hunter had some Blah's to get out once he got the icing!