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.

You know you are micro-preemie mom When.....

1.You use strange initials (C-PAP, CCs, NICU, NG) when discussing your child.

2.You actually remember how many CCs make up an ounce....

3.You count his/her weight in grams.

4. The skin on your hands is peeling from washing so often!

5.You hesitate when someone asks his/her age, but you know exactly how much he/she weighs!

6. The answer to "How old is your baby?" is a story 30 minutes long!

7. When someone asks his birthday, you reply, "Which one?"

8. You start to understand some of the things they say on ER!

9. You turn into Kung-Fu Mom when someone tries to touch your baby.

10. You attempt to measure just how much spit-up he/she just had before you clean it up! 11. You know how much he weighs before putting him on the scale at the doctor's office

12. You cry at Maternity Ward and get mad at Baby Story.

13. You see a 7lb newborn and say "Wow! She's so BIG!"

14. Your baby is months old before he can even go to the mall.

15. You have never explained why your baby is on an apnea monitor.

16. When someone says how tiny your baby is, you argue that he is huge -- and to demonstrate, you whip out pictures of him in NICU.

17. You do a health check on people when they come to your house to visit .

18. You make people wash their hands before going near your child.

19. You want to scream when someone says that she just wants to have this baby now - at week 28, 32, or 34.

20. You are so amazed when someone actually tells you your baby is big for his age!

21. You tried to find a place to buy newborn size diapers in bulk.

22. You called half your relatives when the baby grew out of their first pair of pajamas!

23. You never take your child for granted.

24. You worry about RSV season and it is still weeks away . . .

25. You know what "RSV" stands for.

26. You donate his/her tiny clothes to the NICU and marvel that they seem so small - when they were too darn large!

27. Your son gets a simple cold and her doc sees her within the hour!

28. People say, "He CAN'T be __ old...he's too little!"

29. It has taken them 5 months to grow INTO newborn clothes!

30. You pick up 2 pounds of ground beef and think that your baby was born at the same weight

31. You buy "Purell" in bulk

32. You know about oxygen tanks and regulators more than the company supplying it to the airplanes

33. You can stare at your baby for hours when he sleeps

Buddy gets a G-tube

Jaxon put this bear together at Build - A - Bear for his 1st birthday.  His name is "Buddy"  and he truly has been Jaxon's pal.  He has been to surgery, all his hospital stays and now received his own G-tube.

Buddy



Buddy with his newly placed G-tube

 This has been another long week.  Jaxon woke up Monday having a bad seizure.  I know they are all bad but his breathing was really labored this time.  I tried giving him the meds to stop it and they only slowed it down but didn't stop it.  I called an ambulance and they stopped it after 30min.  He was running a fever of 102.9 possibly with some sort of infection.  This time he has been just plain worn out since.  Normally he rebounds after a day or so, but this time its been different.  We aren't sure if its because of the unknown infection or because the seizure was more severe this time.  His fever has gone away and he still tired but I think overall he is starting to come around.  He didn't sleep nearly as much today.  Fingers crossed he will be back to normal in a couple days.  We missed his neurosurgery and pulmonary appointments on Monday so I had to reschedule.  Talk about a pain.  Now instead of being on the same day we have 2 separate trips to make to KC.  His neurologist wants to keep his meds the same and try again.  It just really sucks we have to do the trial and error method here.  There are other medications but they have their ups and downs just like any medication. 

Fall Harvest

We just finished fall harvest.  Jason and Nathan worked very hard on the new combine they bought last spring to get it ready for harvest.  The old combine we had was so worn down and it was very very difficult to get parts.  Many parts had to be custom made which takes time and some had to even be ordered from Germany (talk about costly just for shipping).  So we bought a John Deere.  Overall harvest wasn't terrible it just wasn't as good as past years.  We feel lucky though many places very close by had a lot less rain and their crops were a total loss.



Daddy's Corey Combine

  Jaxon had his 1st combine ride this year and he was loving it.  He just squealed and giggled.  He loves to watch toys or well anything that spins really.  So the reel on the header was the highlight.  The toy name for John Deere combine is "Corey"




Jaxon and his Corey Combine

 Medical Update:  We got medication at home to stop Jaxon's seizures.  I was so happy the Dr prescribed them for us.  I sleep better at night knowing I can just wake up and stop the seizure without and ambulance or the hospital trip.  Jaxon has been eating really well lately.  He tries just about anything that's soft and dissolves.  Then he will decide if he likes it or not.  He likes cheerios and trix cereals the best.  He is trying to say words that you say, which is wonderful.  He isn't real good at it yet but it shows his interest and progress.  We are still trying to get him an ipad.  Funding is hard to get so we are just gonna save for it and the program so he can use this for communication as he gets better verbally.

Happy Birthday To ME!!

I just wanted to share the beautiful flowers my special little man (and Daddy of course) got me for my Birthday.  I had a bad day at work yesterday and came home to find these on the table for me.  It made my day.

And today Jaxon and I enjoyed morning play time with the tunnel.


Here I come Mommy





His I'm not so sure about this face

 

Discovery Center

On Tuesday Michelle and I took Jaxon and my niece Brynna to the Discovery Center in Gage Park.  It was a blast.  This was Jaxon's 2nd time.  The 1st was not a good experience, it was packed with kids running and screaming everywhere.  He was just overwhelmed as well as scared to play.  This time school is in and there were about 5 kids including our 2.  He took his time warming up to each new area in the center but once he decided it was safe he really opened up and began playing.




Exploring



Jaxon has never done well with paint.  I don't know if it's the smell or just the slimy feeling on his hands but usually he starts gagging.  Well this time he couldn't let Brynna show him up.  He had paint on his hands, glasses, and in his hair.  He was loving it.  I tried to take the brush away because he was slinging paint everywhere and he threw a fit.



Look How Big I am




Drivin the Tractor


Medical update:  Jaxon had another seizure about 2 weeks ago.  This time I just called an ambulance.  I didn't like that driving him to the hospital myself, it was scary.  So after they got it stopped and another MRI we were discharged.  We have a follow up appointment with his neurologist in 2 weeks to discuss treatment options at home.  I'm really hoping we can get medication at home to stop them.  I will sleep better at night.  And then in October we meet with a new Neuro-surgeon.  Our previous one left Kansas.  Right now we have no real idea why he has seizures.

Yellowstone 2011

In August Jason and I went to Yellowstone for our summer vacation.  We didn't think Jaxon would be very interested in a 17 hour car ride and looking at scenery so we scheduled the week for him to stay with all the grandma's in addition to the normal babysitter during the day. 

We had a great time, missed the little guy like crazy but it was wonderful to get away.  We've been trying to go to Yellowstone for a couple years now.  I'll just share a few pictures below.  The 1st night we stayed with my uncle George in Colorado, and then we went to Jackson, Wy (Jackson Hole) for the 2nd night.  We spent the day in Jackson and seeing the Tetons and finished driving to Yellowstone that afternoon.  So I don't keep up on all the cool places to go, but I guess Jackson Hole is one of them I'm told.  We had a really good time there.  Its a neat little town, with lots of little shops selling everything from $5 t-shirts to $55,000 statues.  We stayed in Teton village.  There is a tram that is used as a ski lift in the winter and for parachuters and sight seeing in the summer.





The Tram we rode to the top of the Mountain



 We decided against camping and I'm so glad we did.  We got up at 6 one morning and it was on 28 degrees.  The other mornings were at least in the 40's but wow I'm not into freezing my butt off in a tent.  We also went white water rafting but we didn't get any pictures since we couldn't take our camera.  The best part of going in the raft was the 8 year old little girl with her parents.  She was freezing from the water but was never gonna admit it.  During the calm parts of the trip we were able to jump in the water.  If you wanna get your heart racing, jump in.  It was freezing, but fun.  Jason made a deal if I jumped in, then he would do it.  So I jumped right in.  Well lets just say I had to call him out, because he tried to go back on the deal.

We were already planning our return trip in the future with more hiking and fishing. 

1st Dentist visit and Er visit all in a days work

Today was the little man's 1st Dentist visit.  It went so much better than I expected.  I have been dreading it for two weeks.  The Dr was amazing and his staff are all so nice.  Jaxon felt right at home as soon as we entered the room.  We did have a few tears  but overall it was a really good experience.  We'll do it again in 6 months.

Afterward we visited great-grandpa Melton at the farmers market.  I love the farmers market.  I think I could people watch all day long.  Then on to great-grandma Mullinix's.  Well that visit only lasted 5min and Jaxon flipped off the couch hit his head on the corner of the coffee table and split his eye wide open.  So off to the ER we go.  The only thing I can say, is it's a good feeling taking your kid to the ER for normal 2 year old boy stuff.  It was the fastest and best ER visit of all time.  Nothing a little glue can't fix.  I told the nurse, they should sell that stuff to all mothers of boys!!  He had forgotten about his ouchy 5minutes after it happened.  Its really bad when you go into the ER and the nurse, I've never seen before or at least don't remember, says' "Everyone knows you Jaxon"  and as your walking by a couple of other nurses smile and say Hi Jaxon.  She says "See buddy your famous"  You can only imagine the things I wanted to tell her.

Jaxon's 1st haircut and Family Pictures

Jaxon had his 1st haircut two weeks ago friday.  I put it off as long as I could.  Everywhere we went he was being mistaken for a girl, so I decided it was time to get it cut.  All the way to Auburn, I changed my mind back and forth weather to cut it.  He sat in my lap and did really good.  I brought the DVD player and he watched a movie while she cut away.  He watched Susan like a hawk when she brought out the electric trimmers.  I was so impressed, I figured this was going to be a bigger deal.  He does still have some curl left and I was able to get a few curls for his baby book.  Now if his 1st dentist appointment goes this good at the end of the month.  Somehow I highly doubt it.  Jason volunteered to go back with him, until I told him only 1 parent can go back at a time and he said "oh well I'll just watch through the glass then"

We also had family pictures taken the next Saturday morning and 7am.  Jaxon and I are not morning people but they still went really well. I had never been up to the governors mansion, its really pretty on the hill.  I didn't realize there are such nice walking and bike trails.  Anyway we used a tree line and some hay bales for background.  We had them taken for the March of Dimes Signature Chef's auction.  They use them for programs and flyer's.  If I like them enough we will order some for ourselves. 

A little short story about our adventure, the photographer had one of those little rubber balls with the rubber strings hanging off it to entertain kids.  Jaxon has played with these before and even got a large one for his birthday that he plays with.  Well I guess it was to early in the morning or something, when he went to touch it he started gagging.  I was like well that isn't going to work.  You just have to laugh.  Poor boy, his sensory issues get the better of him.  However, even though he's uncomfortable with certain things his curiosity keeps him coming back for more.  I took him to the Discovery Center near gage park, and he stuck his hand in a tub of beads and I looked over and sure enough he was gagging.  I grabbed him up quick so he wouldn't puke where all the other kids were playing.  It's all about textures and smells.  He also gagged on the smell of fresh tomato's when I was working them up to make salsa.  We spend and hour in therapy every week working on these things and do things at home to help him get past some of it.  His speech therapist said she had heard about such things but didn't really grasp the reality until she saw it actually happening to a kid who didn't do well with wet things.

The Birthday Boy

This might be a bit of a long post since its been so long since my last post.  I promise to try harder to keep this updated a little better.

About a week after my last post I woke up to Jaxon playing in his crib.  He then fell right back asleep and I thought it was a little odd but hey whatever.  When I finally heard him up again, he was staring at the wall with his head and eyes turned to the left.  He wouldn't respond to my voice and I couldn't even move his head.  I new something was wrong, and then he started to cough and gag so I sat on the floor with him until it stopped maybe 10sec.  His hands and feet had small tremors.  I had a feeling he was having a seizure but it wasn't real obvious.  I got dressed threw him in the car and rushed him to the ER.  Half way there he started having full blown seizures and they didn't stop.  Driving 60mph in a school zone is probably bad but we got there with only a few people giving me the finger.  At the ER he required an adult dose of meds to get them stopped.  We stayed a couple days and after and CT and EEG it showed his hydrocephalus was a little worse and yes he had a seizure.  We met with Dr Katz (pediatric neurologist) who decided we needed to see a Neurosurgeon at KU med Dr Grant.  Dr Grant has read Jaxon's head ultrasounds and CT's in the past (from the NICU) we just have never actually met him.  He decided at this time he didn't want to put a shunt in and to follow up in 3 months with another CT.  A shunt would drain the fluid from the brain to another part of the body, keeping the swelling in the ventricles from putting pressure on the brain.  This was all really good news.  A shunt is something he would have to live with for life, always needs a surgery as he grows and comes with possibility of complications like any other foreign object inserted into the body.  Since Jaxon is making progress in most all areas, Dr Grant felt like it may not actually do him any good.  In the mean time he is taking an anti-seizure medication.

The above is why I didn't have time to write.  It was Dr appointment after Dr appointment.  And my little man turned 2 this last month.  He had a wonderful Elmo party and enjoyed all his gifts complete with a hokey pokey Elmo doll that sings and dances.  He's still a little scared of the power wheel 4 wheeler we got him but I think it will grow on him.  No cake yet, but he ate his ice cream.

After his party we took him swimming in Jason's aunt Tina's pool.  This boy loves the water.  He even sticks his own face in.  When you take him out, he just reaches for the water to get back in.

Jaxon's sensory processing ability has been an issue since he was a tiny baby.  We have been doing ongoing therapy, with several therapists in the last 2 years.  I began taking him to the Capper Foundation about 2 months ago and I wish I had done it sooner.  He sees an occupational therapist for feeding and sensory and a speech therapist to learn communication.  He is now eating all kinds of baby food puree only right now (mostly fruits) and Cheetos.  He actually threw a fit in Walmart yesterday because he saw the bag in the cart and couldn't reach it.  He tried and tried, then began grabbing my hand in hopes I would get them out for him.  Nope this momma was wearing a white shirt, no Cheetos right now buddy.  Oh was he mad at me.  I know this sounds like such a small task but if you've seen a child refuse to eat and vomit at the sight and smell of any type of food, you'll understand how excited we are about this.  This is the start of getting rid of the tube.  It will probably still be a couple years before the tube goes away, progress is really slow but I'm much more comfortable with this program and its progress none the less.

He is still just pulling to stand, but some of his other progress has been amazing.  He will carry a toy around in his hand while crawling and uses both hands to pick up toys and use them.  He is so fascinated by toys that have spinning parts.  According to my grandma he takes after his Grandpa Mullinix, when the toys have wheels he turns them over and spins the wheels.  ON EVERYTHING.

And his newest accomplishment is using his sign language.  About 5 days ago, during his speech therapy appointment he signed "more".  He wanted to play with a remote control car.  He is so stubborn.  He tried everything to keep from using his signs.  He tried using the therapists hands to gesture, my hands, just steal the toy from his therapist and finally after about 5 min he realized we were just waiting him out and asked for more.  With everyday its getting better.  Today his grandma Tonya said he signed "all done"  when he didn't want any more food.  I'm very excited.  It might be awhile before he talks so this will be a much better way for him to get our attention and express himself.  We are also using pictures and voice activated buttons teaching him how to use these things to tell use what he wants.  Eventually we would like to move to the ipad and put pictures of his toys, food, and objects on it so he can choose what he wants and it can be taken with us and more easily used when he transitions to pre-school.

Besides growing like a weed and giving mommy a little scare this has been our life for the last 2 months.  Jason and I are taking a trip to Yellowstone in 2 weeks.  Jaxon will be staying home with the grandma's, and his babysitter during the day.  This will be the 1st time since he was born that I haven't seen him at least once everyday.  However this is a much needed vacation.  I think I need this for him and for me.

What's Been Happening Lately

It has been a long time since I've written.  We have been very busy.  Last week we had our March of Dimes Walk.  We had our own team for the 1st year Jaxon's Crew.  I would like to thank everyone who participated.  It really meant a lot to us to see everyones support for such a great cause.  As a family we have spent the last few months doing talks at corporate businesses, tv and radio interviews to promote the March of Dimes.  It has been a great feeling knowing we are giving back to something that has done so much for us.  Even though many people never see the outcome or result of their hard work raising money, I can say I do.  I meet with families that have little ones in the NICU once a month for a dinner and they always tell me how much it means to them to be able to talk with other parents and parents of a Graduate. It really gives them hope.  I met with a mother who's child wasn't real critical but it still wasn't in her plans to have to leave her baby boy every night for several weeks after he was born.  After encouraging her to use some of the resources available to her she actually told me when were leaving the dinner, she would sleep better at night knowing she could call and check on him anytime 24/7 and she wasn't bothering anyone.  The program also provide classes for siblings to learn about their baby brother or sister and so much more.  This is just a small example of what you've done for a family and I would like to thank you all.

Jaxon has been getting ornery by the minute.  I really think even though he is delayed in many things the terrible two's is not one of them.

I didn't check to see where I left off last time so some may be a repeat.  Jaxon is now pulling himself up on everything.  Last night he got himself into the tub.  All I could hear was babbling and a few mama's.  From the sound of it he fell in but wasn't bothered at all.  He was just playing with his bath toys when I found him.

We started see a speech pathologist about a month ago at KU med.  I'll tell you her program is tough to do.  Jaxon hates eating the foods she pushes and he frequently vomits.  I know I was given this little boy for a reason.  The therapist said to me "boy you stayed really calm through all that"  (vomiting after each bite).  She told me you'll do fine with his therapy.  You have it in you!!  Easier said than done let me tell you.  He is getting a little better I think.  The last week or so he doesn't throw up after every bite of something he doesn't like.  Which is all but about 3 types of stage 1 baby food.  It's a long slow road.

Last week Jason and I were on vacation, so we took a short trip to the Omaha Zoo.  Jaxon really liked some of the exhibits.  Some of them were to far away and with his vision he was unable to pick out the animals in the background, especially if they weren't moving.  However the penguin exhibit was a hit.  He was able to get right up to the glass and see them swimming underwater.  They were just showing off.  He was just grinning from ear to ear, babbling and hitting the glass.  He also like the aquarium's since the fish are so close up.  We gave him his 1st ice cream cone.  Lets just say this boy has a sweet tooth.  He loved it.  Ice cream just running down his chin and he was begging for more.  Its great to see him eat anything, but we know he can't live on ice cream no matter how much he would love it.

We met with his eye doctor yesterday and she said he was doing really well with his new lenses.  She upped his script about 6 weeks ago and she changed it a lot.  His lenses are starting to get really thick.  He does seem to see things farther away and doesn't move his head from side to side nearly as much.

June 6th is the big day for yet another surgery.  Jaxon saw his urologist a month ago and I was really hoping he would say he didn't need to see us for another 6 months but that wasn't the case.  Jaxon needs another repair of his hypospadius and he has a hernia that needs repaired.  The hernia is related to prematurity and for now he is only going to repair one side and watch the other as he grows.  We knew there was a good chance he may need another repair but we were hoping it was when he was older.  Lets just hope this is it.

As for the good news.  Jaxon is really making strides in his development.  He is still really delayed and I have to get my butt in gear and get him into some speech therapy (one day at a time) but he is a very happy little boy.  He is at the stage now where he is very aware when mom and dad leave the room or are going to leave without him.  Hope it goes away soon.  I feel terrible when he looks at me with those big blue eyes tears just rolling.  He has begun throwing fits when he doesn't get his way.  Shaking his whole body and yelling at us.  Today he threw his 1st fit in a store over a toy.  I was buying a toy for a friends son's birthday party and when I took it away from Jaxon he was not a happy camper.

Well that's all for now.

Jaxon is crawling!!

1st thing we would like to share is Jaxon started crawling about a week ago.  I was in his room and he crawled up behind me and I was thinking boy he sure got over here fast.  So I turned him around and coaxed him with a toy and sure enough he decided using those knees was just the thing.  He is all over the place now and getting into everything.  We are so proud of him.  The months and months of physical therapy finally paid off.

Jaxon also learned how to put objects back into a bucket or any other item.  I know this sounds menial to some but its a big step for us.  This is usually something that comes pretty natural but it took Jaxon awhile to get the hang of it.  Some of its the coordination thing.  He still isn't always interested but he knows what he's supposed to do with the shapes.  Now on to bigger and better things.

We also had our 1st March for Babies kick off with the corporate crowd.  I admit I was extremely nervous speaking.  I haven't given a speech since college.  It went ok and then the news lady cornered us about doing a short interview for the evening news.  I wasn't at all prepared for that.  Oh well its all for a good cause, as long as we can recruit walkers to raise money and awareness I'm game.

The very best part of our week was Jaxon's very 1st appointment with the KU Med Center feeding team.  It was a very productive appointment.  2 pediatric psychologist, 2 speech therapist, 1 dietitian and an ooccupational therapist were present and our local speech therapist joined us in Kc to attend.  The entire appointment consisted of us getting to know their roles and them getting to know us and Jaxon's history of eating.  At the end of the session, they asked if they could see Jaxon eat something.  I had brought a little puree baby food, he hadn't seen any food in at least 2 months.  As I tried to get him to accept a tiny little taste he just clamped his mouth shut and refused other than tasting what got on his lips.  So I decided to have Jason give it a try, and what do you know that little stink opened his mouth for Daddy and took bites like he does it all the time.  He even moved toward the spoon and was laughing about it.  They saw that anymore than a taste and he gets overwhelmed and sometimes chokes.  So the plan for the next month is to give him tiny tastes for 5 min 3 times a day.  We are hoping he will build up enough confidence we can give him some good sized bites for a swallow study in 1 month to see exactly where the food goes as he tries to swallow.  We will then go from there as to the plan of action.  I'm just so excited he even opens his mouth for food.  I think in the last 2 months he has forgotten all the horrible episodes from the past.  Now maybe we can start on the right foot with good experiences.

Our little guy is changing so fast, and we are so extremely proud of him. 

Most Recent Pictures

I thought since I can't post these on facebook due to copyright and I don't want everyone logging onto our account with the photographer I would post the link on here.

Visit this website www.joleespencer.net click on proofs.  The email addres is mine:  dawn_vandevord@hotmail.com and the Password is JaxonV0111.  They are really good this time.  He was in a very good mood and showed all shorts of emotion.  It will be really hard to choose this time.

Army Crawling

Jaxon has finally decided to get moving.  He is now army crawling some when he's alone and he knows whining won't get mommy to help.  He is doing really well.  The toy has to be super motivating or he will just move on to something within reach.  I'm so excited.  I know it will probably be a couple more months before he actually crawls but its a great start.  He does some assisted standing at a table TARC has provided us, which is great to strengthen his legs.  I believe they are going to bring him a special foam like chair so he can pull himself up and sit down without getting hurt, at least ideally.

We have been chosen as the March of Dimes ambassador family for 2011 in Topeka.  Basically we are the face and promoters in Topeka.  They like to put faces to the organization.  I'm excited to be able to give back to an organization that did so much for us and so many others.  I'm also nervous I'm not much of a speaker and there will be speaking engagements.  I will have to get over it I guess because this is something that has been close to hearts since Jaxon came along.  The biggest event in Topeka is the March for Babies April 29th in the evening in gage park.  We will have a family and friends team this year.  If you would like to be a part of our team please post your email or send it to me on facebook and when I get us registered I'll send you the information to get signed up.  The walk is a lot of fun, there are lots of activities for kids including going through the zoo, face painting, a bounce house and many more activities before the walk.  Afterward there is dinner, usually hot dogs and such.  We are asking everyone in our family to join us.  The purpose of the walk is not just to raise money but also awareness.  So if you don't want to raise money but just join us for the walk or raise money and not walk that's great to.

Update medically:

We saw a cleft palate team at KU Med a couple weeks ago and they were wonderful.  We left feeling like we really had a group of people behind us who we can count on for support.  The surgeon decided no surgery and no further testing to find out exactly if he has a cleft or not.  He said everything is working the way it was intended as far as he could see, but didn't want to do a scope to see behind his soft palate.  He did say he does not have a short palate which is what the surgeon at Childrens Mercy had told us.  We got conflicting answers from the surgeon at CM and when we talked with the surgeon at KU we told him it was important to us to get answers and a plan of action.  Since Jaxon won't eat at all they can't do a swallow study to see where the food goes when he swallows.  He would have to be able to take a certain amount of food to get a good idea and he refuses.  The surgeon wants us to see their feeding team (a speech therapist, occupational therapist, dietitian, and behavioral therapist) for a few months to see if these great people can get him eating 1st.  Some of the ideas he just threw out at us were things we had never even heard before so I'm hopeful they have some new ideas and give us some guidance.  I know it sounds simple just give him food, but let me tell you its not that simple.  He will eat syrup off a spoon and as soon as you put the tiniest piece of pancake on it he will spit it out and gag.  He doesn't do any texture with food.  He will stick any object in his mouth but if he is expected to swallow its a no go.  Our pediatrician trained with this group a little and she said they are very good.  So keeping our fingers crossed we can get him past this.