Monday, July 06, 2009

Long update with pics!

Wow its almost over for the kids they start back to school in just 2.5 weeks! Time is just flying by in a hurry thats for sure. We went on vacation a little over a week ago and I feel like Im still trying to pull everything back together. We took a long camping trip to Salt Lick which is not far from home about hour and a half. The kids loved it we where sat right on the lake with a beautiful view. It was peaceful and nerve racking. Of course being near the water you are always on edge with the kids. Cami proved that as soon as we got there. She lost her footing and slipped on the rocks and fell in Jason turned in time to only see the top of her head the rest under water. Accckkkkkk give me a heart attack so the kids had to wear life jackets any time near the bank just to be safe! Thankfully we stayed safe the rest of the trip.
This was our campsite sat right on the water! It was great!

We took the pontoon boat out for many fishing trips. Man it was great and we where catching the fish like crazy. Jason would go out early about 7am and stay gone till he knew we would be up which was usually about 9:30-10:00! Yes we love to sleep in! So Im glad he got lots of down time with just him and the fish. Said he would catch one everytime he would cast out. Good Times!
One of many fish that the kids caught!

I caught the winner of the day! We still dont know what it was but it was about a foot long. I was just realing in and that thing came right up to it before I pulled my hook up out of the water and took it. I couldnt believe it!

The temps where a little too warm for me it stayed in the upper 90's we tried to hit the beach area but believe it or not the water was colder than ice water. No lie Caleb got in and his hands turned blue it was freezin! We would try to walk out some looking for warm spots(ack) but there where very few we couldnt stand it. Funny thing all the parents where up on the banks while the kiddys swam.
These ducks just came right up to our site and hung out for a couple hours! Caleb said look mama Im swimming with the ducks!

We stayed in for about 10 minutes when Jason said was that your toes? I said where he said in my hands I said no Mine are planted firmly in the sand he said well that was a big fish well lets just say it didnt take me long to hi tail it out of there....LOL! Im not a big fan as it is of not being able to see my feet. On my way out a girl behind him so Oh God what was that the other said I dont know and I dont want to know it was alive and she was moving...LOL must of been the same one Jason encountered!
I think this was the smallest we caught...LOL!

Funny story: One day while we where out Jason was really having a hard time realing a Big something in and Caleb kept saying daddy caught a big fish once pulled up out of the water it was a tree branch that looked like antlers and Caleb says awwww Daddy caught a reindeer.....LOL! Kids do say the silliest things!

This was the only catsifh we caught and it was a night right off our bank!

Cami normally loves the water but maybe because of her beginning scare she wasnt having it at all! She screamed loudly so I carried her in and every time I would get a little deeper she would scream its WET! Yes hunny its water.....LOL but I think she meant its cold she was shivering up a storm. So daddy took her up to the playground since he couldnt handle the water either because of the temp. Caleb hung out in it a while so I sat and sunned!
The beach area and park at the campgorund! Views from the water!

One of the many beautiful sunsets!

That about summed it up for the week just lots of rest, fishing, boating and enjoying the company with each other!

Cami doing her dance in her floatie that she called her Boat!

She would just sit there by the water watching her brother swim with her boat on!

Sweet lil gal she is!
We left out from there and moved to a campground closer to us its about 25 miles from the house. We stayed there for 4 days. Jason promised me a pool and they have a great one. So we spent most of our time in the pool. The kids did so enjoy it better. We taught Caleb how to swim, we had him jumping off the sides and on the last day jumping off the diving board so proud of my lil guy! Cami stayed in the life jacket and arm floaties for extra support but our girl is like a lil ballarina in the water she loves to twirl. She so enjoyed the pool water she was a lil scared to begin with but soon got over it! By the 2nd day she was jumping off the side of the pool with no nose holding and even gave the diving board an attempt but of course didnt succeed she had no idea what to do she just wanted to bounce on the board....LOL! So lots of learning fun! Come to the end of our trip we where pooped out and ready to come home. But not before a skunk joined us and stunk up our camp site and got in our trash! What a trip.
Caleb hanging out in the hammock at our 2nd campground stay!

Cami hung out on her bike! If only we can get her to peddle those peddles and save those little legs from so many bruises!

Now onto Dr.s appts. Cami has been released from her belly Dr. things have seemed to come to some normalcy there but of course once released she got backed up again but with some Murilax she was good as new. So really its only as a as needed basis appts. She also had her Neuro appt where things went really really well. All i can say is that he was so impressed with my girl. He came in and she was talking up a storm which hes never heard out of her. He thought she was a little miracle and said out of all their Infantile Spasms patients she was the only one with such a good outcome. Said they didnt have one to be where she was at and to be doing so well. So way to beat those odds Cami! He examined her, checked the reflexes and tone levels. Said her reflexes in her legs and tone still seem to be a tiny low but no biggy. He was thrilled to hear she came off the Depakote successfully. He has set her up to have a EEG sometime in September to see how her brain waves read without it. Said it may have been the cause of the slow brain waves seen a few months back. He has also requested genetics just to see if there is anything that can be heriditary. Im iffy on that one still so we shall see, the appt is set for next week!

Cameran though I tell ya since coming off the Depakote is like a new kid. Her speech has GREATLY improved. New words all the time and lots of sentences and course there is lots of stuff we have no idea what she is saying but its the cutest. Her new words this week are How for House, Bug, Nack(snack), yuck, stinky stinky, coke, dilk(milk), why, book, baby, hat(is what she calls her head), nose, eyes, Mou for mouth, pink, red, blue, yellow, brown, green(she doesnt reconize any of these colors except yellow on occasion), socks, shoes, feet, cup, up, Elmo, slide, wet, wawa for water, hot, move, whoa, coat, bath, block, boat, please, bird, bite, rock rock for rocking chair, night night is for bed, peek a boo is what she says when she wants her clothes on, cat and says meow. These are all from coming off the Depakote just 2 weeks ago! I know there is more but this is all I can think of right off. Now her mumbo jumbo sentences go something like this : "I want go babab latada go go go bye" If you can figure out the in between just let me know but we get lots of this but its so great to hear.
Now down fall from coming off the med we have seen her sleep get worse again, waking lots during the night. Fussing and staying in a light sleep from like 3:00am and on. Also her moods have gotten worse she has become extremely irritable very fussy thorugh out the day maybe due to lack of sleep at night. And our little fearless is no more. She is even more now scared of dogs and their barking, she runs and screams, shes now scared of the dark and flys. And loud noises just flip her out she goes nuts and runs for security! Not sure what thats all about maybe she is just more aware now that there are no meds to fog her brain....I just dont know!
So lots still going on that we have to figure out and overcome but it too will come with time. She is still throwing major fits, still shows problems in the safety awarness department. She is starting to show signs of understanding things requested a little better. Its more of a routine type deal. And we are still no where near potty training being a sucess she still has no clue on what to do. She will tell us peepee so we take her and she does nothing. She will not sit longer than 5 seconds.

But all in all such huge improvements, I can only imagine how much further she takes off once school starts back!

On to my appt. Well I've made it to 30 weeks seems like it took ages and now time is flying by. I had another ultrasound where things had much improved. Earlier the baby was showing Hydrophenosis which is swelling in the kidneys but we stayed positive and things have since improved. The right side is not considered hydrop right now but the left is still showing a small amount but not enough to be concerned. I was thrilled of this news. THe baby appeared to look healthy and was a busy little thing. But was tucked away good. It would not show its face, profile nothing but a little foot and lots of hair on its little head. Sweet stuff!

After the ultrasound I saw the Dr where we discussed many things one being the horrible pains I've been having in my hips, legs and groin its unbearable gets hard to move or walk she says some women during pregnancy produce to much progestrone causing pains such as these lucky me :) Also we discussed my gestational diabetes which just seems to be crazy this go round. My fastings being the worst and even with Glyburide its not going down so they have set me up with a high risk pregnancy Dr and they will be starting me on Insulin this week. Accckkkk I hate needles so I have no idea how thats gonna work! The baby is already weighing in at 3 pounds 3 ounces and I have 9 weeks to go. They say its at 68 percentile in weight. So I have yet another ultrasound set for the end of this month to check weight again also to see if baby is still breech. But still plenty of time to move ;)

We hope everyone had a safe and Happy 4th of July! We spent the evening with my best friend and her family and it was a great evening! Some Yummy grillin, swimming and to end the evening they had some amazing fireworks but Cami was scared out of her mind poor lil gal she just couldnt handle it!
(Cami clinging on to me for dear life, there was no budging that girl)

But the other kids really enjoyed the show until we got rained out! Wouldnt ya know it we havent had rain in a week and it wasnt to show up till midnight and it had to show up early but we could always use a good rain:) It was great fun!
Caleb and his lil girlfriend Alyssa! Arent they the sweetest!

The fireworks blast off as the rain starts pouring down!

So there you have it our busy summer! I'll update again in a few weeks after all these upcoming appts pass. Happy summer everyone!


Anonymous said...

Did any treat for infantile spasm work for her?

JSmith5780 said...

I am SO jealous! I want to be on a calm lake and just chillin'!!

At this rate, it may never stop raining adn summer may not ever arrive.

Glad everyone the kids (and baby) are well. Take care of yourself too. I look forward to the next update.

Jennybell said...

Isn't it amazing what coming off Depakote can do! We're med free now too thank goodness and hoping the speech picks up! It's only been 2 weeks.
We had the genetic testing done early on and it showed nothing. It was just a blood sample but I think they took about 10 vials of blood out. They checked for a ton of stuff though!
Hopefully her next EEG will be normal and you can feel like it' all totally behind you.
My girl has sleep issues too but I think hers is gassy belly!

Jennybell said...

Has your girl ever been diagnosed with any sensory issues.
this site talks about sensory issues. This site from Canada explains it the best I think