This picture describes the little boy I love so much to a T.

It's funny to read this knowing there are other kids out there just like yours. Jaxon loves to be cuddled and he doesn't dress himself yet. Aside from that these things are Jaxon!! The vacuum and blender are the devil in my house (I haven't had a smoothie in about ooooo 2 years).

Surgery

Jaxon was able to have surgery (Endoscopic Third Ventriculostomy) on Tue Jan 3rd. We were supposed to check in at 9am. As usual when your not the 1st surgery of the day you're bound to get delayed. When we were talking to the Nurse Practitioner who works with the surgeon she asked if Jaxon had had bronchitis in the last 30days and I said Yes. She said well we can't do the surgery then. I almost came unglued. We had met with anesthesia on Friday and I explained how his Pediatrician thought it was probably bronchitis and prescribed antibiotics but didn't do a chest xray. Finally she said well if there's no chest xray and anesthesia passed him then we are fine. OH my momma bear almost came out. Don't get me wrong I always want the safe route but we should have been told 3 weeks ago when I explained on the phone about his illness and then again on Friday when we saw anesthesia for his physical. It was another 2 hours before we saw the surgeon. That's a really long time to have a baby sitting in a tiny room with nothing to do. He was hungry and not happy. Walking to the surgery doors is probably one of the worst things in the world for a parent. I don't care how many times you make the walk it never gets any easier. We've done it from everything to saying good bye through the plastic walls on his bed when he was in the NICU (2lbs) to a now 2.5 year old who knows a little more about what is going on. You just want to give them one more hug and kiss.

We were told it would take about 2 hrs and they would call when it started. About 1.5 hrs went by and we hadn't heard a word. Then we got the call they had started and been working for awhile everything was going good. About 45min later we went into the privacy room to meet with the surgeon. The surgery was a success. Everything went as planned and we would be able to see him in about an hr.

When we went to meet him, he was wide eyed and began crying for us to pick him up. Of course we couldn't, he had to be moved to the Pediatric Intensive Care Unit (PICU). Well things really started going downhill from there. Once we were allowed back, he got really upset, his breathing was very labored almost like a hiccup. His heart rate stayed around 200. After 30min or so he would let his respiration's go down in the teens and his oxygen dropped like a rock into the 40's. Oxygen ideally should be 100%, with Jaxon's lung damage its usually 96-97ish. His eyes were crossed and he just wouldn't relax. He cried and cried, no tears just crying out for hours. In that time he had a couple seizures, one where they had to give him more oxygen and seizure medication. The Dr ordered a chest xray to see if his lungs were having any problems, and after his seizure he ordered a CT scan. At this point we were really questioning if we had made the right decision. After both tests everything appeared to be OK, but he still wouldn't relax. Jason sat with him the chair all night long. Only 1 parent was allowed to sleep in the room in a rocking chair. Since Jaxon was doing so poorly and we are from out of town, we were given a Ronald McDonald room inside the hospital. What a blessing. I slept there most of the night. In the morning I went and relieved Jason so he could go to the room and sleep until we had to be out at 11am. Jaxon had finally calmed down around midnight and slept until 4am. At 4am he got a little fussy again but overall he had come a long way. We were scheduled to move to a normal room out of the PICU later in the day.

The hospital was completely full so we waited all day for a room to get out of the PICU. Finally late afternoon and a room was ready. We were happy, we could have visitors and eat in our room. In your private room both parents can stay the night and you have a private bathroom. Jaxon would be a lot more relaxed.

The surgeon had ordered an MRI the next day at 2pm and if it looked good we should be able to go home afterward. WRONG. Jaxon's heart rate dropped when coming out of the anesthesia. The Dr wanted to keep him one more night for observation and then release him the next day (Friday). The MRI came back normal, possibly even a little less pressure on the brain than before the surgery. The next morning we met with the surgeon again and he released us to go home. As we got Jaxon ready to go home, it was like he knew what was going on. Jaxon and I waited on a bench with our cart of stuff for Jason to pull the car around and Jaxon just laughed and squealed. He couldn't wait to get out those doors.

Everything seemed to be going really good until Friday night at about 8pm, and he began vomiting. We waited until around 3am and finally decided we better take him to the emergency room just to be sure it wasn't from the surgery. Vomiting was on the list of precautions. The ER Dr and surgeon at Children's Mercy didn't think with the absence of any other symptoms it was related to the surgery. He was given anti nausea medication and we took him home around 8am on Saturday. He didn't keep a thing down all day Saturday and just dry heaved and slept all day. By 10pm Saturday night he still hadn't had a wet diaper and now I was getting concerned about dehydration. We decided at 10:30pm we would give him a little water by mouth, it had been 2 hrs since he had last vomited, and if he didn't keep it down we would take him in for IV fluids. He kept all 10cc's of water down. And the wild animal came out. We only wanted him to have the 10cc's and wait 30min. Good luck with that, he was yelling at us, pulling at our clothes and trying to get across the bed to where he had seen me put the syringe. He wanted more water and now. We managed to hold him off 20min and then gave him more. He took 8oz of water by mouth over about 3 hours and kept it all down. This kid doesn't drink anything by mouth ever. He's on the mend!!

Today has been a really good day. Jaxon is tired but he wants to play and kept down milk all throughout the day. I will post a picture of the incision tomorrow he was a little uncooperative today with the camera. They shaved a little square of hair and the incision is fairly large on his little head.

The Neurosurgeon said it would take up to 6 months for his brain to reshape to where it is supposed to be. He has lived his whole life with what looks like a dome from the fluid pressure and it just takes time for it to return. We will go back in 6-8 weeks for another MRI to make sure everything is still working as intended.

We greatly appreciate the prayers and support we get from our family and friends. It means the world to us, we have lost friendships and family relationships along the way because some people will never understand what we go through. And that's OK we sincerely hope no one ever has to understand through experience. We apologize if anyone didn't get a timely update or we just didn't get you called back. We had no cell service, my phone died and had no charger and plain and simple Jaxon took up all of our time and energy.

Christmas

We had a great Christmas. I was a little bit of a Grinch because I had to work in the afternoon but overall it was a good day. We didn't put up a big tree this year because we planned on Jaxon having surgery so I figured it wasn't worth all the effort if we weren't gonna be home. So we had a 2 foot tree on the dining room table. Today I was contemplating excuses to keep using this little tree next year. It was so nice not to have to pack up all the decorations!!

With Daddy:

Jaxon wasn't real sure what he was supposed to do with his presents. He didn't really help unwrap anything. Here are a few highlights from Christmas morning.

And then it was on to the grandparents houses for dinner and presents: Side note: The lesson of sharing is not easy for a 2year old at Christmas time.

Now I have the job of packing up all the old toys and baby toys and making room for the new. Someone was just a little spoiled. We got to visit everyone over 3 days. We hope everyone had a Merry Christmas!!

Surgery Update

Jaxon did not have surgery as scheduled on Tuesday. He woke up Monday morning with a fever and cough. I called and canceled his appointments for Monday and surgery for Tuesday. On Tuesday afternoon he went to the Dr and she gave him antibiotics for bronchitis. After 4 days, today was the 1st day he didn't have a fever. At best they will reschedule 2 weeks from when his symptoms are gone. There is always a reason for everything even if we don't know what it is. We are just putting our trust in the Lord and taking us on the path he leads us. With surgery in the future we can enjoy Christmas and look into the New Year.

Jaxon doesn't really understand Christmas yet but he loves the music. His care taker had Christmas carols playing today and he was right in front of the radio as soon as they started. This kid loves music of all kinds, Jazz is also something that really gets his attention. I can't wait to take him to see the Christmas lights next week. If you are in Topeka, TARC puts on a great show at Lake Shawnee and all proceeds go to TARC. They are the organization that has done so much for Jaxon. They come weekly for different therapies, provide activities and other related services. His caseworker has just helped us get funding for an ipad, so Jaxon can communicate until his speech becomes better.

His speech therapist at CAPPERS has really done all the work on communication but TARC is helping us get the device. It is an amazing thing to watch a child who can't speak, and you have no idea what he really knows show you. I had no idea he knew all his farm animals, or exactly who everyone in the family was. We took some pictures and he can point to them and in my voice it tells exactly what he has pushed. If he chooses the wrong thing, he will go back and choose what he really meant. It's just awesome to see. I will try to post a video soon. We have an ipad on loan from TARC through the holidays and we've put a lot of our own pics and such on it. We are really working on fine motor skills, getting him to use his pointer finger instead of his whole hand to make choices. Once he gets that down we can put more choices on a page and expand from there. The ipad has really made communication for so many much more affordable and convenient. A traditional communication device costs about $3000-$5000 and they are heavy and bulky. Jaxon can pick up the ipad but not the traditional device its huge (we tried it and found the pictures were to small).

This little man is changing so quickly. He has decided he likes bread, pepperonis, and town house crackers, and has tried a bite of Butterfinger. If I eat it, well I guess he has to try it.

Last little update, we got our family pictures taken for Christmas and Jaxon was a terror. However we got 1 family picture (and I mean 1 only) that was GREAT. It's our best family picture to date. Jaxon's individual pictures however weren't the best but at least he's not crying I guess. I would love to share our not so wonderful album with you but I can't figure out how on here so sorry :(

Brain Surgery

Jaxon will be having brain surgery on December 13th for his hydrocephalus (http://www.hydroassoc.org/) This is a great resource for information.

The procedure is called a endoscopic third ventriculostomy(ETV). Here is a good website that explains the procedure a little more if you want to read about it. http://www.hydroassoc.org/docs/FactSheet_Third_Ventricular_Endoscopy.pdf. The short version is the Neurosurgeon will make a new hole for the spinal fluid to drain off the brain. Hopefully with an end result of NO MORE SEIZURES!! There are no guarantees, I sure wish there were.

If you are close to Jaxon before you read the above websites make sure you know reading this sort of material is right for you. It's very much an eye opener and I'll admit is a little alarming. Sometimes even I as his mother just want the overview, I don't want to know every detail because it gives me more to worry about. Before Jaxon's heart surgery when he was in the NICU, a nurse suggested watching the procedure on YouTube. Wow I saw about 30sec and knew I would never do that again. It was with good intent I'm sure but really when it's your tiny baby not a good idea. In this case Jason and I read a lot of research notes and case studies to make sure this procedure was right for us. Not everyone is a candidate and many children don't even get the option because they are either to young or it just wouldn't work in their case. I even talked with other parents and adults with hydrocephalus to get an overall opinion. Many of them said "Do it". They all said they would prefer it over a shunt.

Jaxon will have another MRI on Thursday for more detailed pictures of his brain. His last one was done in September in the Topeka ER and it was in what is called 5mm cuts and the Neurosurgeon wants 1mm cuts. The worst part is he has to be put to sleep for the MRI. I hate putting him to sleep.

We ask everyone to say a little prayer for Jaxon on the 13th. He will be staying for at least 4 days in the hospital afterward. I will post when he gets out and update how he is doing. The next few weeks will be hectic with the holidays and appointments to get ready for surgery. I won't be posting until he's out of surgery. Thank you everyone for praying for our little trooper, he needs all the prayers he can get.

Halloween

Jaxon had a great 2nd Halloween. We decided since he wasn't interested in candy and doesn't care about trick or treating we would just visit the grandparents. Much more relaxing for mom also. We visited great-grandma Mullinix and sported his Superman costume. Then we visited great-grandma Kaff and Grandma Tonya. Lastly we visited Papa Mullinix and Nana and Aunt Amanda and the kids brought home Sonic. It was my 1st chance to get to take him out on Halloween.

Prematurity Awareness Month/ Meeting the Govenor

Jaxon met the Governor last week. We were promoting a proclamation signing for prematurity awareness month. Being able to show a child that has been impacted by programs to support prematurity is a real eye opener. The look on the Governor's face when he was told 1 in 8 babies in Kansas are born prematurely was a look of shock. I don't think he realized how serious this is. The March of Dimes scores each state every year by their ability to change these numbers for the better. This year Kansas got a "B" Doesn't sound great but its pretty good considering only 1 state got an "A" Vermont. There were way to many states with "F's"

I had no idea before having Jaxon how much prematurity there really was. So now every chance I get I like to get the word out.